Need to get started planning for Long Term Care? Here’s an easy way to start thinking about it. Listen to my recent guest stint on WINA 1070 AM and 98.9 FM with Jeanne McCusker and her Saturday a.m. program “A Graceful Life”
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;
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.
I’ve written a lot about the process of choosing an Assisted Living or a Nursing Facility or other alternatives. Actually what I’ve typically written about is the lack of choice we have in such matters and that most of us arrive at that weigh station through a medical crisis with a parent or loved one and our choices have become quite limited.
I’m sure many people don’t even realize there are alternatives to these options. I’m going to talk about several. These options exist or are in the works here in the Charlottesville, Virginia area or nearby. Many of these also exist in other communities or are being planned, so it is worth checking out even if you are living somewhere else.
Many of us are graced with the presence of an aging parent or other relative living in our homes. Or, if they are able, perhaps still in their own homes. Some of them are able to care for themselves and others need constant supervision and assistance 24/7. The first and sometimes only option considered by most, especially if they must work outside the home, is home health or home companion care. If you can afford it, that’s a great solution. However, agency personnel can be quite expensive with costs ranging anywhere from $ 18-30 or more depending on the type of service you need (or combination of services). The types of services are typically: Companion Care, someone to cook, do light housework, watch over someone to ensure they safety, give reminders for medications, perhaps do errands or drive for you:Certified Nursing Assistants (CNAs) can assist with bathing, dressing, shaving, feeding, toileting and the like, in other words, “personal care” and then there are fully trained, professional nursing care, such as LPN’s or RNSand therapists such as physical, occupational or speech therapy. Different agencies provide different levels of care and some may overlap. For example, the national company (generally locally owned and managed franchises), Interim Healthcareprovides all sorts of medical personnel from therapists to CNA but no companion care. Another nationally franchised company with locally owned offices is Home Instead which provides home care including CNAs plus companion care but no other medical professionals. Also worth noting is that most agencies have a minimum hourly assignment, typically 3 hours. As you can see this can add up very quickly.
You can also hire non-agency, non-certified, non-regulated assistance. While this tends to be cheaper, it is also a much riskier proposition. Agencies are required to do background checks (including criminal background and sex offenders). This is not easy information for most private citizens to acquire. If non-agency caregivers are licensed – for example a CNA or LPN – they should be able to present you with their credentials and hopefully, references. You can also check their license against online databases (in Virginia and most states) to make sure they are genuine and you should verify all references. On the flip side, freelance caregivers, because they are unregulated, are able to do more without worrying about the credentials. So a single caregiver could do both the companion work and the personal care piece for a single lower hourly rate. Private rates can run anywhere (in the Charlottesville area) from $14 upwards.
How does one pay for all this? If you’re lucky, your elder invested in a long term care (LTC) insurance policy that covers home care. Barring that, most will expect you to pay privately. In some cases – for example after a hospital stay and with a doctor’s order – Medicare may pay for care and even therapy in your home. This is a great way to avoid “Rehab” – a nice word for a nursing facility stay though typically not permanent. In other cases, particularly low income cases, you may be eligible for an Elderly or Disabled with Consumer Direction waiver or “ECDC Waiver” from Medicaid. One advantage to working with an agency if that they typically have staff that will work with you to help figure out the financing of care. If your elder is a Veteran who served during a “time of war” (not necessarily in “combat”) they may be eligible for cash assistance from the Department of Veterans’ Affairs (VA) known as Veterans Pension and “Aid & Attendance.”
As you may have concluded by now, home care can be a pretty daunting and expense challenge both to manage and for which to pay. What other alternatives are there?
Another reasonable alternative for many working adults with elderly parents or others needing care is Adult Day Care. The most prominent agency providing daycare programs in Charlottesville is JABA. JABA offers a caring and safe environment for any adult (18 years +) who needs assistance with daily health or personal care activities and would like to engage in activities with other adults. JABA specializes in the care of adults with dementia.
Temporary or short term Home Care and Adult Day Care are also excellent opportunities for family caregivers to simply take a break and tend to their own needs for rest, recreation and relaxation.
There are two recent, very exciting developments that have come to Charlottesville!
The first, all ready up and running and signing up participants even as I write, is the brand spanking new Blue Ridge PACE which stands for Program of All-Inclusive Care for Elderly. PACE is a collaborative effort between UVaMedicalCenter, Riverside Medical and JABA – our local Area Agency on Aging. PACE programs are operating all over the country and proving a very successful alternative model (they’ve had one in Lynchburg for a couple of years. Its associated with the Centra Health group).
PACE programs literally provide all the services the elderly need under one roof – or under your roof. Doctors, nurses, social workers, activities, day programs including breakfast, lunch and snacks, pharmacy, transportation, physical/occupation and speech therapy and more – all in one place. You must be a “dual eligible” (Medicare/caid) and over 55 to participate. You may also “join” and pay privately for membership (e.g. not Medicaid eligible) paying a flat fee for membership and using all services. They deliver services both in their new facility at 1335 Carlton Ave and in your home. Even if you need to have an in-patient stay at a rehab facility following an illness or surgery, your stay there is covered by your PACE participation. Sounds too good to be true doesn’t it? Well, time will tell. but I am very excited about the prospect for Charlottesville seniors. I hope you’ll take the time to stop and visit them and ask for a tour.
There’s another interesting project underway, this one a little further out in terms of its availability. It is called CharlottesvilleVillage. This concept allows seniors with varying levels of need for assistance to stay in their own home and to – collaboratively – design the kinds of services they need to remain independent. Whereever possible, these services are provided by volunteers from within the community. For a good look at how a “Village” works, take a look at the recent PBS documentary on the subject, titled “There’s No Place Like Home: Seniors Hold on to Urban Independence into Old Age” If you’d like to find out more about the Charlottesville Village project, you can visit their facebook page here.
Finally, for those seniors for whom living in their own home (or yours) is truly no longer an option and some sort of institutional care is the only route left, there is one more chance to avoid the traditional “medical model” we all hate. It is called the Greenhouse Modeland it has nothing to do with ecology or saving the earth. Except in a psychic sense! The Greenhouse Model is also sometimes referred to as the “Eden Alternative” and was first conceived and brought to life by a doctor, William H. Thompson, in 2003. He decided to redesign long term care from the ground up. Since that time, Dr. Thomas created The Green House Project a national non-profit organization dedicated to creating alternatives to traditional nursing home care. The project creates “caring homes for meaningful lives” for elders where each has a private room and bath, can move freely throughout the home, build deep relationships with each other and participate in preparing their own meals. It is based on a philosophy designed to reverse “enforced dependency” in a traditional nursing home by creating small intentional communities of 7-10 residents created to foster late-life quality of life and continued intellectual, emotional and physical stimulation and health.
Unfortunately, Charlottesville does not yet have a Greenhouse Model project (yet! Its my dream to bring one here!) However, they do have one just over the mountain in Harrisonburg. The Virginia Mennonite Retirement Community (VMRC), a 750 bed “Continuing Care Retirement Community” nestled in the Shenandoah Valley recently opened a Greenhouse community. While I’ve not had a chance to go see it myself, I’ve heard – from very reliable sources – that it is indeed a dream come true.
I’ll continue to explore the possibility of opening a Greenhouse Project in Charlottesville (the initial barrier is a licensing issue, but that’s another blog post and too boring). In the meantime, I just wanted to let people know that there are already several viable alternatives to traditional Assisted Living and Nursing Care facilities and that you should look into them before making any decisions.
There are days – most days – that I really love what I do. Working with older folks and their families can be a very rewarding and joyful experience. Those days, for
example, when I get to tell an older couple, fallen on tough times and who are having many medical issues and who have a very limited income, in the first instance, that I am able to connect them with a reputable mortgage broker who can get them a good Reverse Mortgage on their home. Not something I often recommend, but in this case a good fit. A a bit later, I get to deliver word that we will be able to get them Veteran’s Benefits that will more than double their monthly income. And better still, the award is retroactive for two years providing them a windfall of almost $26,000. Cash. Tax Free (it’s disability payment, not income)..
Or when I have a group of adult children, who, together with their husbands and wives, don’t see eye to eye about “what to do about dad” but I am able to convince them the best approach is to get them all into a room with Dad and come to some agreement. And we do. And all of them hug me as they leave the room. Even Dad.
Then I have days that are not so easy. Even though I’m still very happy about the work I do for people. Days where the circumstances themselves are much harder. Like being called to a hospital room for a client who is actively dying and still doesn’t have a Will. Often they are frightened, anxious and lonely in such circumstances. To be able to bring some level of peace in what remains of their lives is a tremendous gift to be able to experience – but it usually leaves me flattened and exhausted emotionally.
And then there are days like this one. Where I am the client and it is my family that I am dealing with. Like today. Today I am moving my mother to an Assisted Living. She’s not fighting me on it. She’s ready to be taken care of better and she knows we and the paid home caregivers we have been juggling just cannot do it anymore.
Mom is nearly 84 and has multiple medical issues which means she also has a fairly complex medication regime including potentially dangerous things like insulin. She suffers from some cognitive deficits and can no longer remember what she took, how much, or when. And at her age, she’s also a bit unsteady and frail. Falling is a constant concern. It’s a potentially very dangerous situation, never mind being isolated and lonely.
Mom has lived alone since my dad died last year. We had a grueling 3 year descent with his last illness that took it out of all of us. I had hoped we’d get a break after that. We did get the briefest of respites and Mom even got a little better when she was no longer being leaned on as primary caregiver herself. But that short window has now slammed shut and now Mom needs 24/7 care herself.
When I went to the facility yesterday with Mom to finalize all the paperwork (two and half HOURS of droning on about rules, regulations, “rights” and signing endless forms) it finally hit me that I am putting my mother into an Assisted Living Facility. When the overhead page came across inviting residents to Bingo I nearly lost it.
It’s a very nice place; run by a partnership of Centra Health and the Christian “Disciples of Christ” as a non-profit (something I insisted on). It has a wonderful reputation in this area. It’s spotless, no lingering odors of food or other less pleasant things; it’s got tall ceilings, is full of big windows and splashed with sunlight Has a lovely dining room and “chef prepared” meals three times a day plus snacks twice a day. She will be in a very pleasant, sunny room with a nice view of the lake and Peaks of Otter Mountains in the distance. The property backs up to Thomas Jefferson’s other plantation property, PoplarForest, and will not likely ever be developed.
I went back over this morning – alone – to take some measurements to see what furniture, pictures, plants etc. we would take over with us. I sat on the bed and cried.
You see, I work with people in Assisted Livings all the time. I know what its like. I know they are understaffed and overworked. That for all the smoke and mirrors in the glossy brochures and happy smiling faces on their websites, the reality is something quite different.
I am grateful that there are many well trained, deeply caring people who work in facilities for our elders. CNAs, med-techs, social workers, nurses, activities coordinators. But for all their best efforts and good intentions, they are often too overworked or too few. Or paid so badly that just the struggles of their lives outside work become too overwhelming for them to perform well. Many are grandmothers taking care of small children at home. They have worn out their bodies doing this thankless, backbreaking work for decades. And still they show up day after day.
I know that the only way this will work out is I or one of my siblings or one of mom’s many friends still in the area is there all the time. It is the residents who have no one to speak up for them who get the short end of the stick. Residents who do advocate for themselves sometimes end up becoming known as “troublemakers” and soon staff learns to ignore their requests for assistance (the very reason they are there!) – or worse – retaliates.
I know my mother will be infinitely safer and looked after here. But my heart nevertheless is aching.
This week, we discussed it. My brothers and sisters. My mother. It’s our time. Is wasTime for THE Talk. No, no, no! Not the birds & bees talk! It’s time to look for ways we can keep my increasingly frail mother safe, healthy and as independent as possible. Not in her home, alone, anymore. We recently all agreed that she needed “companion-care” every day of the week at her house. We increased from 3 days to 7 days assistance every morning to help her up, ensure she gets dressed, eats a healthy breakfast, takes her medications and checks her blood sugars. The caregiver is also supposed to fix a main mid-day meal and make sure there’s something light mom can get on her own for dinner. Plus her companion can do any light housework or errands mom needs done. She is also to generally monitor Mom and make sure she is safe and healthy. In addition, we engaged a home health agency (nursing staff) to assess and monitor mom from time to time to help coordinate her medications and treatments with her doctor. Again: emphasis on safe and healthy.
Even with all that in place, I recently had to have her admitted to the hospital when a persistent bronchial wheeze prompted me to make a surprise visit. I found her still seated at the kitchen table, two hours after her lunch, staring into space and unsure when or what she had eaten and with no clue as to whether she had taken any insulin or tested her blood sugar. Not safe. Not healthy. Worse, her pill tray indicated she had not taken any of the medications in her automated/alarmed pill tray for the last day and half and I could not determine what she might have taken instead during that time as other medication bottles and an older pill tray with some meds in it were scattered all about. I feared that the accordian sounding wheeze in her chest that had now gone on for over a week together with the coughing spasms it was spawning were putting a strain on her heart. Of course it was Saturday. The on-call physician from her regular doctor’s office agreed that this all warranted a trip to the E.R. Eight hours, a nebulizer treatment, blood draw and urine specimen later, she was finally admitted for a three day stay.
My partner (an R.N. who works for hospice) calls this sort of hospitalization “buffing up the old folks.” Either they will maintain and grow stronger again, or they will sink back into their frailities once released.
It’s not clear which of these Mom is going to be. But one thing is certain; staying alone for long stretches is not going to work. This has been coming for awhile. The seed germinated even while dad was declining in the last three years and since his death last year. Now Mom, at nearly 84 years of age, is progressively more isolated and lonely; her health has suffered as a result.
She will likely be with us for a good deal longer with proper care. But it seems that proper care is going to require significantly closer attention and supervision and very probably, a move somewhere closer to myself or one of my brothers (I am the closest geographically and I’m a 1.5 hour drive away).
Are you in this situation too? Many older folks find themselves with this dilemma.
I once had a client, Mrs. L., 97 years old, and still driving. I saw her in her home. She was dressed appropriately and got around very sprightly, even up and down a very narrow steep staircase to a basement apartment she rented out. She was very intelligent. Well educated and highly articulate. Her eyesight and hearing seemed to be entirely intact. Many books lined the walls and she had been a college professor for many years. The house was both neat and clean (including the bathroom and kitchen, something I always try to find an excuse to look into as disorder there is a good sign of trouble and also sometimes a health hazard).
Mrs. L. called me because she was having some problems with a plumber who she had hired to do some work downstairs in a basement apartment. The work took several days so she had given him a key to the basement door. She believed he was still coming in her house and stealing things – her house and car keys, her checkbook, her eyeglasses, other important papers. She also believed that later, he was bringing his girlfriend with him and “using” the other bedroom. She could hear them on the other side of the door or wall, but never saw them. She cowered in her bedroom when they came. Days later, her things would mysteriously re-appear – in another place. We talked for about 2 hours before her story started to come apart at the seams. Details became fuzzy. She contradicted herself a few times. As the afternoon wore on, and the sun started to sink, it became clearer to me that there was no plumber and things were not being stolen. She was simply misplacing them and forgetting where they were. She said she knew that people believed she was “cuckoo” and “batty.” She insisted she wasn’t but refused to visit with her doctor and let him offer an opinion. Indeed, she had fooled most everyone who came by – because she was comfortable in her own environment and functioned pretty well during daylight hours. This included the police department and Adult Protective Services who had both been out several times. Was she in danger? I don’t think so. Was she suffering? Almost certainly. Every couple of months, she calls me to tell me more about the “robbers” which claims is getting worse. I will then call Adult Protective Services to request a “welfare check” (typically someone from the police or sheriff’s department goes and checks up on a person in a welfare check). There’s little more we can do until she really isn’t able to function there or something worse happens.
I like that story as an example of just how well people can function even with dementia so long as they are undisturbed from their routine and familiar environment.
That is why I find it useful to observe older folks outside of their normal environment. Even if it’s a different room from the one they normally sit in (typically “their” chair in front of the TV). Why? Because in their comfortable, day to day setting it’s easier to fool you. Mom or Dad can find their way about more easily, even with severely impaired eyesight, they know exactly where everything is. They have the steadying hand grips memorized, they get visual and audio clues from familiar objects and sounds. They don’t get confused or disoriented as easily in their little nest. Or, they do, and like my mother, can pull themselves together as long as someone is there. A surprise visit caught her “out of it.”
Best bet: Take them out for a few hours. Go to church, to a friend’s house, better still, an ice cream cone or pie & coffee. See how they cope in a setting where they are NOT as familiar. Throw in a bit of background noise and people moving about – just a bit, not a cacophony!
First of all, they will enjoy this change of scenery and time with you. Even if they resist at first (inertia is a powerful force) gently insist. Even the slightest activity and stimulation is good. Food is a good motivator as it is the highlight of every day for them.
When friends and family come around, do they participate in what’s going on around them? For sustained periods of time? (more than a few minutes) Frequently, older folks who are struggling – with cognitive issues, hearing or eyesight – will sit in the midst of a gathering, but no one notices that they are “tuned out.” They are physically present but quite isolated by confusion, poor eyesight (can’t tell who’s there) or inability to hear or understand everything going on around them. This makes participation very difficult. Try playing a card or board game with several people involved. Turn. the. T.V. off.
I like to find out how many medications they are on and see if they can identify them all and what they are taking them for. Medication interactions, misuses, and overdoses are extremely common in older people. If they can’t accurately review them with you – you need to get with their doctor. Medications can cause dementia-like symptoms and other problems that can be eliminated. I’m a Juris Doctor not a Medical Doctor so I don’t give medical advice, but my experience with my mother has shown me again and again that thanks to the number of doctors prescribing plus the number of medical issues she has, medication errors happen. They happen a lot. They happen because doctors frequently to not tell each other what they are doing; pharmacists are too busy to pay attention and there may be more than pharmacist in the mix. My mother gets some drugs at her local pharmacy, and others via mail order. Then there’s the plethora of over-the-counter meds — Mucinex, Tylenol, Cough & Cold syrups, laxatives and more. All with potentially serious interactions with prescription medications. Then there are the supplements like mega doses of vitamins. My mother is loathe to throw expensive medications away once the course of treatment is over. As her short term memory begins to fail, we found we just weren’t sure what was supposed to be in the pill tray and what had been discontinued! Two that were discontinued were prescription pain meds – one was the powerful, highly addictive narcotic, Oxycodone.
There are many temporary causes of symptoms that masquerade as dementia – or other cognitive impairments, like confusion, paranoia or even psychosis. The most common in my experience is a urinary tract infection (UTI). In this case a simple course of antibiotics clears it up in days returning the person to normal mental function. Other reversible causes for “dementia”-like symptoms can be caused by high fever, dehydration, vitamin deficiency or poor nutrition, a bad reaction to medications, a thyroid problem or a minor head injury.
Mom and I had a preliminary discussion about moving elsewhere a few weeks ago. She was sad and afraid. Never thought she would need to be “cared for” because she has always been the caregiver. I’ve tried really hard not to hide the ball from her. I explained all the factors we were taking into consideration – financial, practical and most important of all – HER preferences. My brothers and I are doing the “legwork” – setting forth all the options we can think of together with the financial data as precisely as we can get it. I call it the “spaghetti exercise” — throw everything on the wall and see what sticks. Where? With one of us (requiring modifications to home to accommodate her mobility issues)? A facility of some kind? An apartment near one of us? Some options will fall off the wall and out of consideration all by themselves as impossible, unaffordable or undesireable. Others will bear closer scrutiny.
Yesterday, while visiting Mom in the hospital, we got on the phone with one of my brothers and I told him I felt we might have to speed the process up a little and get mom into some sort of Assisted Living or other arrangement closer to one of us more quickly. He agreed. So did Mom. I said (we were on speaker phone) that I didn’t think Mom was happy about it, but that she would cooperate and contribute. When we hung up, Mom commented, “Doris, I’m not unhappy. I think I’m ready.”
Are you? I can tell you this is a very, very difficult process. For everyone involved. However I caution you not to wait until Mom or Dad has a serious fall, a stroke, heart attack or other debilitating medical issue. At that point, your choices, practical, emotional and financial will be much more limited.
Observe Mom & Dad closely over the holidays. And don’t make a pie. Take them OUT for coffee & pie!
Happy Holidays all. A healthy and prosperous New Year!
This is going to be a tough post. I’m going to talk about death and dying. I’m going to tell you some stories of clients and friends who have died recently and what it was like.
In the course of my work, I spend most of my time counseling older folks and their adult children about their options. How to manage their stuff when their health fails. Who will make and what healthcare decisions need to be made. How will they distribute what’s left of their stuff when they die?
Those discussions often begin when a elderly parent has a medical emergency or takes a precipitous decline. Sometimes the parent or adult child has had the foresight to engage me or another professional before a serious health issue occurs.
One such client, I’ll call her Lucy, died last week.
Lucy called me up last year and engaged my service a year or so ago. At that time she seemed pretty healthy although she was growing older and frailer. Lucy was an artist. As is sometimes the case, I connected with Lucy in ways I don’t always do with my clients. Some of them I grow quite close to. I liked and admired Lucy – I think we were both immediately comfortable and at ease with each other sitting around her kitchen table in her comfortable old farmhouse surrounded by much of Lucy’s collected treasures. Lucy has several adult children. She agonized over whom to name as Executor over her relatively modest estate, whom to name as Power of Attorney and whom to make her Healthcare Agent. We settled all that and a week or so later she dutifully signed, had witnessed and notarized all her documents. That was that!
I ran into Lucy a couple of time over the last year. At an art show. At the SeniorCenter. She had divorced her first husband eons ago and never remarried. She did have a “companion” – he too was growing older and quite frail. But she took him everywhere and they seemed quite content in their circle of family, friends and community.
A while back – maybe 6 weeks ago or more – a mutual friend of informed me that all was not well. Lucy was sick. They feared it might be cancer. They were doing tests and would know more soon.
In my line of work, this kind of news is pretty common. When you work with older people, they are forever dying on you. It comes with the territory. So I was not surprised by this news though I was saddened and concerned for Lucy, her friend (who needed her to help with his daily needs) and all of her adult children, grandchildren and even great grandchildren.
I didn’t hear anymore until last week, when one of the sons, one called me to tell me that Lucy was in the hospital. In fact, she was in ICU. And that it “didn’t look good.” He wanted my help to sort out Power of Attorney issues and might I be available. I told him I could come by the hospital right away and to look for me within the next ½ hour.
By the time I reached the hospital ICU unit, the representative from Hospice was already there. Lucy and her sons were making plans to transfer her to Hospice House. She would be discharged there the next morning provided all arrangements could be made.
Lucy did not look good. Her breathing was very labored and she was panting a little even. She was on oxygen of course; though she was always a slight little thing, she seemed emaciated and sunken to me. Her skin color and tone was bad. Her eyes were darting rapidly from side to side and she was clearly very anxious.
The most I could do was reach out and take her hand and say hello. I said, “well, I guess I don’t have to ask you how you are…?” — that got a wry smile out of her.
The hospice person excused herself and looking at Lucy I could tell she was overwrought and tired. They had come in early that morning by ambulance into the E.R. and it was now after 5 p.m. After asking her permission to speak to her sons (which she gave) I suggested perhaps she was tired and needed some rest to which she promptly agreed. I asked her if she minded if we went down the hall – just the boys and I – to talk for a few minutes. She nodded with relief. Her eyes were drooping already (I presume she was already getting large doses of pain medication).
When I tucked Lucy up in her bed, I noticed she had ink marks on her chest. The kind they use when they do radiation treatments. She was cold so I pulled the blanket up further and touched her cheek by way of goodbye. I was pretty sure I would not see her again.
I walked with the boys to the “consult” room. They told me that they had been told just today that Lucy had stage 4 lung cancer. Then they told her there was nothing more they could do. I told her sons that now was not the time to worry about banks, or bills, or Powers of Attorney or any of that stuff. Now was the time to spend with their mother and each other. And then I left inviting them to let me know how things progressed and to call me if there was anyway I could be of assistance.
Lucy never made it to hospice. She never even made it out of the hospital. She was transferred off the ICU and died a few hours later in a “regular” hospital bed.
For six weeks (at least) Lucy had undergone tests and treatments of all kinds – she had struggled to breathe, had radiation, and all kinds of drugs and chemo for six weeks. Surely the medical community had already diagnosed her with stage 4 lung cancer. Worse, they had to know the treatments and poisons they were pumping into her were all for naught and indeed made what remained of her life more difficult than it had to be. Just organizing alternative care for her companion and getting to and from the dozens of appointments she must have had would have been a serious challenge.
This is not the first case I’ve seen like this. Nor the last.
Earlier this spring, I was called to see a man in UVa Medical Center. He was suffering from advanced liver cancer. He had been treated, radiated, chemotherapied and was preparing to be discharged home into the care of hospice. He wanted my assistance to write his burial instructions and Will. He was on heavy doses of narcotics. He could not tell me what time of day it was or even if it was night or day (there was a window right behind me. He was in pain. He was bloated and discolored and he could not hold his hand steady enough to write. He died the next day at home before he could finalize any arrangements and before Hospice could even sign him on.
Last year I was called by the administrator of a local Assisted Living to write a Will for a gentleman who was already completely debilitated and near death – blinded from the effects of diabetes and macular degeneration, he was in great pain and suffering from several serious medical conditions. The next day he was transported to Martha Jefferson Hospital where he lapsed into a coma and died of uremia and kidney failure without ever regaining conciousness much less executing a Will.
Three years ago, a dear friend – not a client – at age 80 developed a very aggressive form of lung cancer. When I told my partner, who is an R.N. and hospice case manager, about my friend and told her was called a “Pankose” tumor, she shook her head knowingly said, “six weeks.” My friend proceeded to deteriorate quickly. Yet the radiologists and oncologists continued to urge her to undergo radiation and if possible, chemo to check the tumor’s growth and “make her more comfortable”. The tumor was inoperable. It was so large and so entwined in the brachial nerves that there was no chance surgeons could safely get at it. After a few weeks, my friend developed a blood clot in the arm on the same side the tumor was growing. Her arm swelled to the size of an overripe melon. She was in agonizing pain yet the doctors insisted she continue to get up, dressed, climb in the hot car (it was June), travel to Mosby Radiation clinic, undress, climb on the table and lie flat and still on her back for 30 minutes or more. Weeks before she had already developed difficulty lying down at all – even laying propped on a wedge pillow in her own bed caused her pain and made breathing (not to mention sleep) difficult. Lying on a cold metal table staring at a radiation tube for ½ an hour was sheer agony.
I went with her on several of these trips to various doctors and clinics (she had accompanied me months before to MY appointments at UVa’s Cancer Center and visited ME in the hospital following surgery).
About three weeks in, she had just about given up and was asking the doctors about alternatives. Not yet ready to say “hospice” the discussion turned to “palliative” care. That is, treatment to make the patient more comfortable, relieve pain and reduce symptoms. A week later, my friend had just about decided to give up “traditional” cancer treatment (which was having no positive effect in any event) when the radiologist said to her, “Oh I’ve seen patients with this kind of Pankose tumor live for 5 years!” So my friend struggled back up on the table for her radiation treatment again.
A week later, we were in the hospital with her again. The clot was so painful and the swelling so bad that something else needed to be done. They were giving her difficult to manage injected blood thinners to try to help break-up the clot and prevent any new ones from forming. This treatment seemed to have no beneficial effect.
My friend was discharged home with the plan that radiation would continue along with blood thinners and a pile of other difficult to manage medications – the radiation was to help reduce the tumor and hopefully allow the clot to dissolve “over time.”
That week, freak windstorms – micro-bursts- took out electricity through large swaths of Charlottesville. My friend’s house was one of those without power for over a week in the sweltering heat. She could not be easily moved. By now, she was also on an oxygen tank which thankfully had battery backup power. She was, by now, pretty much confined to bed and couldn’t stay awake long enough to read or watch television anyway so she didn’t care about lights or power. We used damp cloths to keep her cool and pushed water to keep her hydrated and she seemed to be fine with the heat – she was old school and wasn’t crazy about air conditioning she said. She wanted to be in her own home. Soon, she would need so much pain medication – Oxycodone and Roxynol in combination – that it was difficult to get her bowels to move and she had become impacted, another very uncomfortable situation. She could barely get out of the bed to get on the bedside commode to urinate and then, because she was so unstead, only with the assistance of two of us. Even with the narcotics she was in excruciating pain and robbed of all dignity. Her hands shook so badly she could not administer her own meds so if no one was there to help, she went without her doses of painkillers. Or spilled most of it on her nightgown and sheets.
Still, the doctors wanted her to continue radiation. Finally, my friend said enough. She agreed to a “Do Not Rescuscitate” order and had the medical team refer her to hospice.
I stayed with her the day the nurse came to admit her to Hospice; she took her medical history and vital signs and explained what could be expected in the days to come.
At the end of that afternoon my friend was exhausted. Physically and emotionally, completely spent. As she sat back she asked me to rub her back which I did. She finally lay down and said, “I can rest now, can’t I?” I stroked her head and assured her she could.
Corrine died two days later. Almost exactly 6 weeks after my partner predicted she would.
One last story, I’ll cut it short:
A friend from law school developed cancer on his tongue. A young man, with a new wife and young child. He had a growing law practice when his life was cut short. I won’t go into all the details but he tried valiantly to fight it. He lost. Toward the end, as in the stories above, the oncologists and other traditional medical staff threw every mighty poison and potion they could at the cancer they were fighting. That’s what we do in America. We fight heroically. He also went down in immense pain and suffering —half his tongue cut away at first then the remainder of his tongue removed. More surgeries, chemo, radiation. Finally, he died after the excruciating pain as his bones cracked from the metastasizing cancer that grew in them. This is traumatic for friends and family to watch someone they love die this way feeling there is nothing they can do to alleviate their suffering.
We do not allow our dogs and cats to suffer this long and to die this badly.
Am I advocating euthanasia? Not at all. My point is that we have allowed “traditional” medicine to make decisions that do not serve their patients well. In fact, in some cases we have allowed them to conduct torture under license from the Board of Medicine.
Many, maybe most, patients don’t know that they can ask their doctors about alternative treatment plans. Palliative or comfort care. Holistic or natural treatments. Or that they can refuse treatments altogether. Hospice care, which, by the way, doesn’t mean you are actively dying. Hospice can come in six months in advance. And if you don’t die in six months? Your doctor certifies you for another six months. Many patients actually IMPROVE on hospice care and a few are actually discharged.
Most patients, by the time they are diagnosed with a fatal illness, are not in any position to absorb most of the very technical jargon and obtuse information that is thrown at them by medical professionals. Many of us simply are in a daze. We nod and go along with the treatment plan they set forth without our really grasping and understanding what the choices are. If any are even discussed.
As a cancer patient myself, I can tell you that ones ability to absorb any kind of information past the word “cancer” is greatly diminished. I’m sure that the same holds true for those receiving treatment for heart disease, kidney failure, Lou Gehrigs disease or any of the many other things that are ultimately become our “cause of death”. (N.B. I have been cancer free for 3.5 years)
Medical professionals are trained to “cure” – to cut, to prescribe medication or chemo, to radiate, do physical or other therapies – even when it is clear that such treatmenst are without benefit or that their value is outweighed by the suffering and pain they cause. Medical professionals – yes, doctors – as well as pharmacies, ancillary treatment facilities and hospitals – are also billing hundreds of thousands of dollars for every test, image, treatment, lab test, consult, prescription and every follow up visit that goes along with them.
There is much broken with the healthcare system in the United States. But one thing that I see that is consistently broken and badly managed is the way that we die. And those astronomical medical bills? They don’t die with the patient. They go to his or her estate.
Polls consistently show that most people wish to die naturally in their own homes. Yet the vast majority of people in this country end up dying in an Emergency Room. or ICU or CCU with a nurse or resident pounding on their chest and another shoving a respirator tube down their throat, along the way breaking some of their frail and delicate teeth and ribs. Many of the older people that die this way arrive by ambulance from the nursing home or assisted living where they believed they could pass quietly but that facility does not wish to have another “statistic” on their watch.
This kind of violent, tortuous death is not what I want. Most of the people I counsel do not want that kind of death.
As a patient you have rights. Residents in Assisted Livings and Nursing Facilities have rights. How do you protect them? You can help protect your healthcare decisions and see that your care plan goes as you want it to go only by making sure others know what your wishes are; that can only be done effectively in writing. Get an Advanced Medical Directive – and if appropriate – have your lawyer include appropriate language to consent to a Do Not Resuscitate order (DNR). Have a serious, open discussion with the person you appoint as your Healthcare Agent (Medical Power of Attorney). Ask questions of your physician or other providers, get an advocate if you can’t advocate for yourself (and most frail elderly and sick people are not able to do that for themselves)
Talk to your loved ones now – do not wait until a medical emergency is upon you! You can “die well” – comfortable, free of pain, and with dignity and you can do so in your home, in a nursing facility, in a hospice house or if you prefer, in a hospital.
Don’t wait until you get sick to do this. Do it NOW!
Last week, I wrote about how it is that we really have very little to say in the matter when the decisions are made about taking our aging loved one to a nursing or rehabilitation center when they have a serious health issue arise.
In fact, there’s plenty we can say and do, it’s really about knowing in advance that you have plenty of choices, that you could and should ask many questions and offer input into the healthcare decisions of your loved one. Unfortunately for most of us, these decisions are made when both our loved one and we, as caregivers and family members, are completely depleted – physically, mentally and emotionally.
At the conclusion of the last segment, we had arrived at the “Health & RehabilitationCenter” and Mom had been admitted. Let’s revisit the “Rehab” and see how Mom’s getting along shall we?
So let’s say, a week has passed. In that time, the staff of the nursing home – nurses, social workers, recreation/activities, physical, occupation and speech/language therapists, (pt, ot, slt) nutritionist or dietary and so on – have all had a chance to do their part on a “baseline” assessment which is done for each and every patient who goes to a Medicare/Medicaid qualified nursing facility (that would be most, not all, there are a very few exceptions). This is called the “MDS” assessment or “Minimum Data Set.” Medicare and Medicaid keep careful track of every patient and it is from these assessments that
a) Billing is done for Medicaid
b) “Quality Measures” are assessed by Medicare.
The first is pretty obvious – Medicaid pays for certain things at certain rates and MDS codes tell them what to reimburse.
The second might seem a bit more mysterious until you understand that nursing home staff are required to continuously update their assessments so that changes are documented for every resident at regular intervals. For instance, if a patient arrives and on their initial MDS assessment, they report no pressure ulcers (bed sores) and 90 days later, the same resident now has bed sores, there has been an decline in the quality of care. If patients report chronic pain and classify it as a “number 2” on a scale of 1-10, but it gets worse, say the patient later takes a stronger painkiller and self-reports his pain is now a “5” – that too is reported. Things like Urinary Tract Infections (UTI), occurrences of Depression and other things are also carefully monitored. This set of statistics forms a picture of the “quality” of the care patients are receiving at any given facility.
This information is also readily available, to the public, online – for free! You can access it by using the 5-Star Quality Rating System provided by the Center for Medicare/caid Services (CMS). There’s a very readable set of documentation available on what it is and how best to use the system (click on the link). You can search for data on a particular facility or compare several facilities at the Five Star Rating System. (click on the link). You can also see reports on staffing levels and recent inspection reports (“surveys” in nursing care parlance) including the actual reports of problems as cited by the surveyors.
So your Mom has now been “MDS” assessed and from that a “Care Plan” has been designed in conjunction with her care team. First up at bat are likely to be the PT/OT/ST team who will try to get Mom into as much therapy as possible. She will have been assessed and orders written by her physician to try to get Mom to the “least restrictive alternative” for her care – that means discharged home, discharged to another facility such as an Assisted Living or to a “unskilled” nursing facility.
Lets say Mom has had a stroke and is “hemispherically” (one side, lets say left) impaired. She has trouble walking, talking, seeing, swallowing and doing most everything that engages her motor system on the left side. She also suffers from some “aphasia” – that’s a condition where, due to the damage caused by a stroke (in this case) the person may make mistakes in the words they use, or perhaps using the wrong sounds in a word, choosing the wrong word altogether, or putting words together incorrectly. Its a problem not of motor skill, but of the brain’s ability to handle language and communication. Your mom’s case is not bad and the SLT thinks they can correct it with some intensive therapy.
So your mother’s days are full up with intensive therapy to help her physically – to strengthen the weakened and impaired left side, and to work on balance; in Occupational Therapy – to help her figure out new ways to do tasks that she used to do without a thought: putting on her socks & shoes, getting things down from the pantry shelf, dressing, bathing and getting on and off the toilet by herself. Then hours of very intensive therapy to improve her swallowing and language. At the end of each day she is exhausted and discouraged. When you come to visit at dinner time she is depressed and irritable. She hates the semi-liquid food she’s given because of her impared with swallowing. Her roommate (she can’t afford the upcharges for a private room) watches TV all day and all night at full volume and with the lights on. When she finally does fall asleep, she is awakened by the constant noise from the nurses station down the hall or someone coming to draw blood or check on her roommate. You try to cheer her up by reminding her “its only temporary Mom, you’ll be going home soon.”
Well she has 100 day right? That’s what the hospital caseworker said, “Medicare will pay for Rehab for up to 100 days.” Yes, that’s what they said. Note that it is “up to” 100 days. And she didn’t say that Medicare would pay for ALL the charges. Indeed, right around day 20 you will start hearing the Administration of the facility start making noises about “discharge planning.” What? Mom is ready to come home? Well, not exactly. They don’t necessarily mean discharging Mom home. They mean discharge from therapy, or more accurately, discharge from “Skilled Nursing.” Again you say, “what?!”
There’s a fly in the Medicare ointment. And it has little to do with your mom. It has to do with Medicare’s reimbursement schedule. What they actually pay – at 100% reimbursement – is the first 20 days of rehab. After days 1-20, you pay a co-pay (depending on whether you have traditional Medicare, or an Advantage plan – all of these are moving targets, but basically it comes out in the end). On days 21-100 you’ll pay $144.50 “co-pay” each day and Medicare picks up the rest.
(By the way, if you find yourself in the hospital in advance of such a situation, one critical question to ask is if you’ve been “admitted” to the hospital as an inpatient. Well of course you were admitted! You were there for 4 days! Except, today, hospitals routinely bring patients in on “observation” and in fact, unbeknownst to most, they are not admitted as inpatients. To go from a hospital to a skilled nursing, or rehab facility and have Medicare pay for it, you must have been admitted for a three inpatient day stay, not including the day you leave. What if you were on ‘observation’ on day one, stayed two more days as an inpatient and left on the fourth? No, Medicare won’t pay for your rehab because you only had a two day inpatient hospital stay. Sneaky huh?)
Most nursing facilities know perfectly well that most of us can’t afford to self pay from our own pockets for rehab. So, ready or not, they’ll begin making noises about “de-certifying” Mom from rehab because they don’t believe she can pay. Will they ask you about it? No. If there’s no second payor insurance (e.g. a private or supplemental policy that picks up where Medicare leaves off) they will start making noises such as, “your mom is no longer getting better” or “your mom doesn’t seem to be motivated in her therapy anymore” and the next thing you know you’re either frantically making plans to put mom elsewhere – your house, an assisted living, home with a home health agency coming in – or heaving a huge sigh of relief when the social worker at the “Health and Rehab” Facility offers you the option of simply moving mom to an “unskilled bed.” There she’ll be taken care just as she has been all along (for better or worse!) but without all the pressures to participate in therapy to get her back on her feet. Indeed – she might be very hard pressed to get any therapy at all. Often we hear about “restorative therapy” that is meant to keep residents from losing whatever physical gains they’ve made. (notice they are now “residents,” no longer “patients”). Generally, that will consist of a Certified Nursing Assistant (CNA) walking with a resident and perhaps doing some mobility work with them (manipulating arms in legs in bed or shower).
Mom has now gone from a temporary “Health and Rehabilitation” patient, to a full-time, long term care resident. And if you think she was unhappy before, wait until you see what starts happening next!
Tune in next week, same time, same place….. for Part III – “Choosing” a Nursing Home
Lately, I seem to see lots of articles, blog posts and general hot air on “choosing a nursing home.”
Bad news for most of you. Very unlikely you’ll get much choice in the matter. I don’t recall ever seeing people walking through the front door of the lobby, followed by a bellcap with their bags as they “check in” to a nursing facility.
No. Here’s how it generally happens:
An elder person has some kind of serious medical issue that lands them in the hospital: a stroke, a fall that breaks a hip, a bout of pneumonia, major surgical procedure or any number of other common but very worrisome things. When the crisis is past, there remains a period of rest, recuperation and typically, rehab.
By this time, if they have family, they have all gathered round and different people have different ideas about how to care for mom or dad. And what I call the “sandbox issues” have begun. Brother Tom thinks mom should come home with him where his wife (who mother doesn’t much care for) will take care of her til she’s back on her feet. Sister Sue thinks Mom should go to rehab then an Assisted or Independent Living Facility (ALF or ILF) because she obviously can not take care of herself anymore. Baby sister Cindy thinks with a short stay at rehab Mom will be her old self again and can safely go home. They begin to argue amongst themselves and all the ancient tensions of “mom always loved you more” began to re-surface. I can assure you that none of this is helping Mom to recuperate.
In the meantime, in some back office, a hospital administrator is squawking at the discharge planner (another name for a caseworker or social worker) that she needs that bed. That beds got to be emptied. Why? Because Medicare will only pay for ‘x’ number of days following (surgery, stroke, whatever) and her x number of days are about up. It doesn’t matter that they aren’t managing her pain well or that she’s not healing as quickly as another might. The formula says x days. And ‘x’ days is going to be all she gets. (They seem to assume that no one can afford to pay for hospital care privately. And that’s true, most of us can’t, which is why we have insurance)
So, here comes the discharge planner into the wasp’s nest that Mom’s room has become with all the siblings gathered round. Discharge planner comes armed with a pile of paper including one that lists all the home health, skilled nursing/rehab (NFs) and even hospice agencies in a five county area. By giving you this incomprehensible list, she can say she has informed you of your choices. She tells you that she’s found an available bed for your mom in Acme Rehab and that discharge to Acme is scheduled for tomorrow as soon as the doctor writes the order.
Kids are non-plussed and immediately set aside their ideas (for the time being until “I-told-you-so time comes around) and begin to organize around the decisions made for them all (with little or no consultation with Mom). Discharge planner tells you about the rehabilitation professionals and equipment in the Acme Rehab and how great it is and how quickly Mom will be back on her feet. No one asks any questions, or goes to visit Acme. They start packing up Mom’s nighties and toothbrush preparing for the glorious migration to rehab tomorrow.
In the morning, after a long wait for the hospitalist to make rounds and write the discharge papers, nursing staff to do their thing, you have Mom put on a gurney and transferred by medical transport (another name for an ambulance) to Acme Rehab. In the meantime, because you think you’re leaving any minute, Mom misses bath, breakfast & medication.
When you arrive at Acme, Mom is wheeled into the facility still strapped to the gurney.
All she sees on the way in the building is the ceiling and light fixtures and the chin of the guy who hasn’t shaved for several days and the overhang of his beer gut while pushing her down a rather smelly hallway. Food smells and um, worse smells, assail their forward progress. Medicine carts, food carts, laundry carts, block the halls or rattle past. The gurney takes a sharp turn past a nurse’s station where several people in scrubs are talking on the phone, writing in charts, dialing the fax machine and basically impervious to the person flying by on the gurney.
You, in the meantime, have been ushered into the business office or admissions and are seated at a table across from a new face. There’s a stack of paper in front of them and a couple of pens. This person smiles ingratiatingly, turns the stack to face you and pushes it across toward you along with one of the pens. He or she starts flipping through the pages and ‘explaining’ at warp speed what they are. Periodically they put the pen in your hand to have you sign something. And, obedient child that you have momentarily reverted to, you acquiesce.
Meanwhile, in your head, all you’re hearing is the sound like Charlie Brown’s teacher in the cartoons “Mwah-mwah… mwah mwah, mwah mwah. Ok? “ “Sure, yeah, okay” as you sign the last page. Also running through your mind is, “Where have they taken Mom?” “Is she going to be okay?” “She didn’t eat anything this morning” “Did we get the discharge orders from the hospital?”I have to call Mom’s brother Ike and let him known she’s here” “Have we made the right decision” (when you should be asking, “Did WE make a decision at all?”
Of course, if you heard anything at all from the admissions person or saw anything that you signed, you are extremely unlikely to remember it even a few hours later. And where did you put that copy they gave you?
How do I know? Because, when family members come to me and ask me to represent them and I look over the contract they brought with them, I ask them, “do you know you agreed to ….? (pick any number of things). They give me shocked look and say “I never….?” And I hand them the contract, point to their signature and confirm that it’s theirs. No one remembers that they agreed to a whole host of things – as just a few example, they contracted to:
waive the right to sue the facility in court.
use arbitration instead with the nursing facility’s chosen arbitrator;
to be “R.P.” or “Responsible Party”
as RP you agree to pay the bill if Mom can’t (this is not legal, not under Federal Law or under Virginia Law and you can not agree to it)
Could this have been avoided?
Yes, and more importantly, it could have been avoided at several points:
1) They discharge planner doesn’t decide where your Mom goes. Your Mom does. Perhaps with your assistance. She also has the right to refuse “the first bed available” and the right to weigh many options. Handing you the list of agencies and options only technically meets the mandate caseworkers have to inform patients of all the options before them. Mom could have gone home with an order for home health and physical therapy. Or she could have gone to outpatient therapy, or she could have gone to any number of facilities.
2) You do not have to vacate a hospital room because a discharge planner says so. You have to be prepared to pay for it or arrange for payment, but before making a decision, someone should have visited the nursing/rehab center to make sure it was up to snuff. You can check out nursing facilities through Medicare’s “5 Star Rating System” first to narrow down the acceptable options. Since Medicare regulates nursing homes, they collect extremely detailed data, including staffing levels, quality measures and inspection reports – all of which you can look at online. They put it in pretty accessible form to make that easier. (see http://www.medicare.gov/nursinghomecompare)
3) Upon arrival at any facility, the emphasis should be upon getting Mom settled into her new surroundings. She is probably scared, in pain and unsure of what to expect next. All the paperwork and contracts can wait. And the contract does NOT need to be signed right now by anyone, not you, not your mom. In fact, I often tell caregivers (adult children, Powers of Attorney etc.) not to sign the contract at all. Mom can sign it and it can be signed later after someone that is in full possession of their senses has had an opportunity to look it over. You, as caregiver are stressed, tired and not clear on what’s happening. Your mother is sick, medicated and possibly suffering from mild dementia or psychosis (both can be caused on a temporary basis by long hospital stays). Neither of you is in top form to sign an important legal document that is likely to have very serious consequences.
Is there more? Oh there is much more. Stay tuned for Choosing a Nursing Home. Part Le Deux
Lately there’s lots of “advisors” out there talking about Veterans Benefits. Many are also hawking annuities and “planning services” (creating trusts etc.) to make Veterans Eligible for these benefits. Meh!
The VA Enhanced Pension – often erroneously referred to as “Aid & Attendance Benefits” is meant for certain Wartime Vets who are in need of cash assistance. It is not meant for people wanting to leave all of their accumulated wealth to the next generation. In that way, it is like Medicaid — a program designed for citizens in need of assistance as they age.Unfortunately, many of the “planners” (largely insurance salespeople, financial advisors, and yes, lawyers) don’t really have any idea what they are doing with regard to these vulnerable elders and their need for assistance in paying for Long Term Care (whether at home, in nursing facilities or assisted living). Or maybe they do and just don’t care? By “planning” for VA benefits (divesting the senior of assets to make them eligible for benefits) they inadvertently may cause the Vet or his widow to become ineligible for other benefits – particularly Medicaid.
If you, or someone you know is a Vet (our surviving spouse of a Vet!) and you believe s/he might be qualified for Pension and Enhanced Pension benefits, you might want to talk to a qualified advisor. And to be honest, it is difficult to tell who actually is qualified. (I am certified to practice before the VA and any lawyer that is offering to do VA Benefits work that is not, probably is not a good choice – I can’t speak for the other professions) The Dept. of Veterans’ Affairs allows you to search their list of qualified representives here: http://www.va.gov/ogc/apps/accreditation/index.asp – but you do not need to have a lawyer or representative to apply. But I will warn you that it can be a long and complicated process.
If you’re a Vet and have no idea what I’m talking about, but want to know more, see if you can fit into the guidelines below then give me a call. I can help.
General Guidelines to Qualifications for Veterans Affairs Enhanced Pension
SERVICE ELIGIBILITY REQUIREMENTS
Served at least ninety (90) days active duty
At least one day served during a qualified wartime period:
WW2 12/7/41 through 12/31/46
Korea 6/27-1950 through 1/31/1955
Vietnam: if served inside Republic of Vietnam, 2/28/1961 through 5/7/1975, if elsewhere then 8/5/1964 through 5/7/1975
Gulf War: 8/2/1990 through some future date TBD.
Any discharge not categorized as dishonorable;
FINANCIAL ELIGIBILITY REQUIREMENTS
Assets owned by claimant must be limited. Amount claimant may hold depends on age and health of claimant. No “hard & fast” rule on maximum assets although generally if they exceed $50,000 readjustment of claimants holdings may be necessary. WARNING: do not give away or divest of assets without consulting a professional planner familiar with both VA Benefits and Medicaid. Planning for one set of benefits may result in disqualifying claimant for the other!
Assets that are NOT counted: Primary residence, car, personal effects.
Income: gross income evaluated after reduction by total out-of-pocket annual medical expenses (including pharmacy, Medicare/insurance premiums and typically, the entire cost of Assisted Living is deemed “medical expense”)
THE VA PAYMENT RATES:
Basic Pension for those over 65 and meet above criteria – pays the difference between countable family income and the yearly income limit (see chart below). This difference is generally paid in 12 equal monthly payments rounded down to the nearest dollar.
Tom is single and has no dependents. He has an annual income of $5,000 from his union pension. His annual income limit is $12,465. To determine Tom’s V.A. Pension subtract his annual income of $5000 from the $12,465 income limit . This comes to an annual V.A. pension rate of $7465. This translates into a monthly VA pension check of approximately $622.
If the claimant is housebound, the amount increases as does the income allowed. Likewise if the claimant requires “aid & attendance” (with activities of daily living such as dressing, bathing, eating, toileting) – the amounts increase. In the case of Aid & Attendance, a doctor’s statement will be required.
For all the ads for Viagra or Cyalis or other drugs to help men with “Sexual Dysfunction” there seems to be no shortage of older folks have no trouble whatsoever doin’ it.
For folks that work in nursing and assisted living facilities one of the most unsettling issues they have to deal with is intimate relations between residents.
It’s true that in some older folks, either desire or function has diminished. In some cases its a health issue. In others the side effect of some drug. But for many older folks – even VERY old folks – sexual function is still alive and well.
While some are actively engaged in sexual relations, others are just looking for a intimate connection and that often includes close physical contact.
One major problem in long term care facilities is a lack of privacy. Most nursing facilities only offer “semi-private” rooms as their standard accomodation; that means two perfect strangers of the same gender sharing a very small space and a bathroom. Its hard enough to agree when lights are on or off, how the TV volume is managed, who has how much storage space. Imagine having to hang a sock on the doorknob to advertise you’re needing some privacy with your loved one when you’re in your 70’s?
Under such conditions its impossible to have a close, personal relationship with someone which may or may not include sex. But residents and their family’s should know that thanks to the 1987 Nursing Home Reform Act, they DO have rights, explicit rights to privacy for instance, and they should be respected. You can read more about “Residents Rights” here
Another problem is the moral or religious values of caregivers — nurses, social workers or aides who frown on consensual sex relations between adults and actively work to prevent it. The imposition of one’s cultural, moral or social beliefs on another is also wrong. The freedoms and rights surrounding beliefs and mores of senior citizens are to be as respected INSIDE a nursing facility as they are in the halls of the Supreme Court.
More recently, a seemingly new social problem has arisen. In 1969 the “Stonewall Generation” kicked off the creation of a new, “out and proud” gay and lesbian community. These folks built community in our cities and countryside, they created community centers and health centers catering to the gay communities unique needs; they won protections against discrimination in housing, employment and public accomodation in many states, and more recently won battles over gaysserving legally in the military and in some states, equal marriage rights. They came “out of the closet” in force – suddenly appearing in television programs, plays and movies, on the streets, in the bars, in your YMCA – and in your church, your schools and everywhere straight people were. But notice that if you were a gay activist or just coming out at say, age 25 in 1969, that means today you are 68 years old today. You may be in good health, but many others are not and “grey gays” are thinking about and talking about Long Term Care options in greater numbers than ever before.
If you are husband and wife, you can share a room in a nursing or assisted living facility. As a same-sex couple, you are treated as perfect strangers and have no right to demand a shared room with someone who may have been your lifelong partner.
If you are a husband and wife, you also have options with regard to Social Security, Medicare and Medicaid and other retirement benefits that may help preserve assets for the couple. As a gay couple, none of this applies and both halves of a gay couple are subject to the likelihood of being completely impoverished by the high cost of Long Term Care.
Its a little uncomfortable thinking about sex among seniors in nursing homes. Imagine how uncomfortable it is for some seniors – greying gay seniors – whose relationships are completely and officially unrecognized and often unofficialyl go unremarked. The issue is not really about the sex — although just as for younger people, sex is certainly a part of our lives and finding ways to meet the needs of seniors in this regard is important as it is for younger people. More importantly, its about preserving the longtime, intimate relationships that keep us healthy, vital and happy.
Denying that older people have intimacy needs and sex lives is silly. Forcing them to deny their sexuality is unhealthy. Forcing gay seniors back into the closet in order to live in our typical Long Term Care facility seems unconscionable.