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”
The title of this post is a play on words, but you won’t get it unless you read this entire thing. For a change, this attorney is going to be talking strictly about the law. Today I’m writing about some NEW laws that directly affect the community of older adults and their caregivers. I’ll try avoid the “legalese” to make it all more understandable (and not so boring) plus why, and how it affects you and your loved ones. The first law I’m going to share with you is the NOTICE Act. ”NOTICE” is an acronym (of course) that stands for: Notice of Observation Treatment and Implication for Care Eligibility. It’s a federal law, so it applies to anywhere in the U.S. But before I talk about the law, let me describe the problem it’s designed to fix… When you go to the hospital, if you have a heart attack, a stroke or a serious fall for example, you’ll likely find yourself in the E.R. From the E.R. you get moved to a room. For two days, you occupy a bed, eat hospital meals, have nurses and aides bustle in and out taking vitals, giving you pills, and charting everything; they help you bathe, or shave; doctors order tests and x-rays or images; a doctor comes to see you every morning. Unbeknownst to you however, it’s quite possible that even though you are: receiving hospital care, from hospital staff, in a hospital room, laying in a hospital bed, eating hospital food, even wearing a hospital gown with your rear-end exposed – yet – you have not been “admitted” to the hospital. It’s true! Instead, you are there on “observation” and you are NOT admitted as an inpatient. I have seen patients in local hospitals on “observation” for as much as a week. Why does it matter? You’re getting all the care described above right? Well, let’s expand the story a bit…. After two days, the doctors decide that you don’t have a broken hip, or, that you had a stroke or heart attack, but you are stable now. You are weak, maybe have issues with balance, but you no longer need acute (hospital) care. However, they say you could benefit from physical therapy and rehabilitation. So they discharge you to a rehab center. You stay in rehab for a week to get your strength back and work on the balance issues. So far, so good. Two months later, you get a bills from the hospital and 7 days in rehab for tens of thousands of dollars. Shocked and dismayed you just can’t figure out why Medicare didn’t pay part or all of your bills. The hospital bill, while on “observation” is covered by Medicare Part B and only as outpatient services. Unlike Medicare Part A, which covers inpatient hospitalization, Part B has a sizable deductible and very likely co-payments for every doctor, test, pill or technician who touched or saw you while in the hospital. Some of you may not have Part B Medicare and might be on the hook for the entire hospital bill. Worse, Medicare simply will deny payment for 100% of the rehabilitation unless you had a bona fide inpatient hospital stay for at least three days (not including the day of discharge). Observation days don’t count. That means that you might have been on “Observation” for two or more days, and then as an inpatient for just two, but without the required three day Inpatient status, there will be zero Medicare coverage for the rehab. You may want to know why hospitals do this. (if not, skip the next coupla’ paragraphs and read the good news about how the problem is being addressed). There’s a reason hospitals have adopted this observation status myth. The reason is that if they RE-admit patients too frequently, Medicare dings the hospital and takes back money they paid them for what Medicare thinks is too much ineffective hospital treatment. The theory is that if hospitals are effectively caring for patients, are reimbursed by Medicare for that care, then patients should not be going through a revolving door in and out of the hospital. In response to the re-admission penalties levied on hospitals, hospitals simply stopped admitting folks in the first place. Instead as described above they simply placed you on “observation.” When you later come back to hospital through the revolving door, you are not a “re-admit” – you’re either on observation again, or perhaps admitted for the first time. On paper. Here’s the rub. Hospital’s refusing to admit you so they can dodge the requirement to reduce re-admissions resulted in a situation where Medicare – instead of penalizing hospitals for insufficient care –are now was dinging (clobbering?) patients for the care and rehabilitation they desperately need. As if sick, frail elderly people needed more stress? The biggest problem of all was that patients and their caregivers had no idea what was happening until it was altogether too late. You found out only when the bills came! And even those patients who knew enough to inquire as to their admission status, found it extremely difficult – if not impossible – to pin the hospital down to tell you if you were an inpatient or on observation status. Enter Congress. Yeah, yeah I know. I can hear you groaning from here. But for once, they did a really good job. The NOTICE Act, first introduced in the House in February of 2015 sailed through both chambers and was signed by President Obama on August 6th of 2015 to become the law of the land. In short, the NOTICE Act, “require[s] hospitals to provide certain notifications to individuals classified by such hospitals under observation status rather than admitted as inpatients of such hospitals.” (You can read the entire bill and the Congressional Research Service Summary here.) The details of the law are great. It requires hospitals to provide this notice to all patients that are there on more than 24 hours of observation status, the notice must be a written and oral explanation of their status, in a way that you understand and they have to explain the consequences of that status (see above!). Never the less, it will probably be a while before hospitals step up to this requirement. If you or a loved one lands in the hospital and you find yourself in a room, or in the E.R. for more than 24 hours, ASK what your status is. They have to tell you. Meanwhile in VIRGINIA, there’s a new law on the books that attempts to help slow down that revolving door that so often results in return trips to the hospital. Initially called the CARE Act but now enacted in the Virginia Code as § 32.1-137.03. Discharge planning; designation of individual to provide care (you can read the entire law here). This law (enrolled July 2015) is designed to force hospital discharge planners (they used to be social workers) to provide critical information to the family or designated caregiver and allows caregiver to ask questions and receive training so have the tools needed to see to the necessary follow up care. This must take place before the patient is discharged. I cannot tell you the countless number of times I’ve encountered elderly patients, too sick and completely overwhelmed to have any understanding of what’s happening to them when hospitalized; Likewise, family members are completely dazed, emotionally drained, on edge and not truly understanding a darn thing that’s happening when a discharge planner calls them to tell them “we’re discharging your mom this afternoon.” Then they are given a pile of papers to sign (which they do not have time to read, much less understand), mom is loaded into a wheelchair and off they are pushed to the revolving door out front. Small wonder, when Mom or Dad are not adequately cared for at home – for instance a medication error is made, a missed appointment for needed tests or therapy results in another trip to the E.R – yep, yep, yep. A “Re-Admit” and back through the revolving door of the hospital (see above). When the family or paid caregiver makes such a mistake, it’s hard to blame them. They have a pile of unintelligible discharge paperwork that they didn’t understand at the time, and they don’t remember what (if anything) was said either. They are still tired and stressed. The CARE Act was designed to address this problem by sending patients home with a properly informed caregiver who has all the information and ability to carry out needed care tasks. Key elements of the law (notice the placements of “must” “shall” and “will” – they got to do it!): Each hospital inpatient can designate someone who will care for, or assist the patient in his/her residence (home, not another hospital, rehab or nursing facility). I will call that person the “caregiver” though the law refers to them as “designated person”. The hospital will consult with the caregiver regarding his/her ability to provide the care, treatment, or services. The caregiver’s name and contact information is charted at the time of admission. The patient can change the caregiver at any time and the hospital must chart it within 24 hours of the change. The hospital must give information regarding the patient’s discharge plan and any follow-up care, treatment, and services the patient requires prior to discharging the patient. The hospital must provide the caregiver the opportunity for a demonstration of specific follow-up care tasks that they will need to perform based on the patient’s discharge plan before the patient’s discharge They must also have an opportunity to ask questions regarding how to perform care tasks. Hospitals must communicate this information in a “culturally competent manner” and in the caregiver’s native language. The hospital shall notify the caregiver of discharge and shall provide the caregiver with a copy of the patient’s discharge plan and instructions and information regarding any follow-up care, treatment, or services that caregiver may need. The discharge plan shall include a description of the follow-up care, treatment, and services that the patient requires; that must include contact information about any health care, long-term care, or other community-based services and supports to carry out the plan. This new law, which we’ll call the CARE Act, is a basis for holding hospital discharge planner’s feet to the fire. Their job can no longer just be a matter of filling out forms and shoving patients out the door. They must now ensure that discharged patients and their caregivers have the necessary information and tools to make sure their patients can go home and get better. Together, these two laws are tools we can use to make sure you get the care you need during and after a hospital stay and ensuring that Medicare will properly put the emphasis on hospitals to provide quality care so that we can stop the revolving door. I hope that’s made some important new laws understandable for readers who are “frequent flyers” at hospitals and that is most of my elderly clients. For now, that’s enough law from this attorney. Stay safe and healthy!
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!
For you newcomers, you should know that some of my writing is only tangentially related to legal subjects. That is because my practice, while specifically focused on Elder LAW is really about elder ISSUES. Many of the problems brought to me have less to do with the law than with family dynamics, institutional bureaucracies and most of all, communication.
Speaking of communication, I hit a home run with that last Facebook post about unconventionally stylish older women! I think 15 new people “liked” my page in the space of 24 hours. A new record. I expect that it may be because it was not a “legal” article. They are so boring.
I think the real reason my last post garnered so much attention was because it was about older women – truly older: all in their late 70’s up to 90 – and each was defying the standard expectations for women their age. They were interesting, colorful, supple, and beautiful. They did not dye their hair or have face lifts to “preserve” their youthful beauty. They are beautiful, articulate and interesting just the way they are.
It brings to mind the struggle I face when asked how I define “elder.”
Apparently, the vogue for the word “senior” is passé, and “elder” is right behind it. We shall have to adopt a new term but I don’t know what it is yet. There is a gentleman, himself of advancing years ( 70-ish?) but who is still very active in business and attends my “Aging in Place Business Roundtable.” He describes his target market as those who are “55 years old and ‘better’” — I like that, but it is hard to use as a noun.
I have learned not to label my clients by age. My clients are sometimes not very aged at all. The adult children of aging folks are often the first ones to contact me and they may be as young as 35-40. The upper end of my clientele’s age has been 101 (she is still alive a year later so 102 and counting!). I have worked with nursing home residents, laid low by deteriorating health, who are as young as 60.
The video I posted clearly confirms what I experience in my day to day practice; age is not a number but a state of mind. And health.
Many, if not most of my clients tend to arrive – both elders and their adult children – thanks to a medical crisis. A crisis involving themselves, their spouse or their parent. As stroke, major surgery, chronic illness, a fall, onset of Alzheimer’s or other dementia. As the result of these events, my clients have quite suddenly become aware that they have not prepared for the inevitability of growing older. In particular, they have not prepared for the overwhelming number of choices that must be made nor the costs involved.
We are definitely living longer and in most cases, we are living better. Because of this, we must make our resources last longer. Every situation I encounter is a bit different. From those figuring out how to hang on Social Security alone, to those living out a gracious life with lots of savings and a permanent roof over their head. And every shade within that spectrum
At this time of year I like to recommend to those going home to visit the family to try to look at our families through different eyes. We all tend to deny signs and symptoms of aging and increasing frailty because, if Mom or Dad is getting old…. then what must be happening to us? We owe it to our parents and to ourselves to look at our loved ones realistically, without the rose tinted glasses.
Planning for a lengthy, stylish, energetic old age should not be done in the midst of a crisis. Once a medical situation has arisen, the choices before us become quite limited and resources – both financial and human – are drained appreciably.
Not all of the planning I suggest to people is of a legal nature. There are other considerations beyond a Will, a General Power of Attorney and an Advanced Medical Directive (the basics). Nor is it all financial. You may want to download and print out my “Advanced Life Planner” (a.k.a. “Where’s My Stuff?”) and use it as a guideline.
If you wish, print two, take it home when you visit Mom and Dad for the holidays. Ask them to fill it out. If they will agree, do it together since this is a great way to start a conversation with Mom or Dad about everyone’s thoughts, plans, views, anxieties and fears. You may be surprised how much easier it is to talk about such things when one’s death is not looming over the hospital bed.
It sure beats trying to guess or gather this information in the intensive care unit after Mom or Dad has had an injury or serious illness.
This year, in addition to the good food, fancy clothes and parties, give a gift to yourself and your families. Give a gift of peace of mind!
The use and abuse of antipsychotic drugs, particularly in the elderly, is a widespread problem.
Physical restraints are generally illegal, especially in the aged and frail because it is so easy injure them using physical bed restraints (tying them to the bed!) They have frail bones and its easy to tear their delicate skin. Not to mention it is degrading and inhumane. We just don’t tie people up in nursing homes anymore.
Nevertheless, institutions are often horrifically understaffed and those on staff are overworked. So institutions have figured out ways to control their sometimes unruly residents by tying them down invisibly. Particularly those residents suffering from Alzheimer’s or other forms of dementia. Chemical restraints. Specifically, medications that sedate and make the residents more docile, or simply sleep through the day. The most commonly prescribed of these are antipsychotic drugs – Seroquel, one of the newer class of antipsychotics is one example. Haldol, an older class of antipsychotics is another. There are long lists of these and similar drugs that the FDA has warned should NOT be used in the elderly or dementia patients. Indeed Seroquel, Haldol and their many “cousins” are dangerous for the elderly and dementia patients especially. So much so that the FDA has mandated a “black box” warning about the use of such drugs. in the elderly.
If you are looking after or advocating for an elder, particularly if they are living in an Assisted Living Facility or Nursing Home, you should be aware of this issue and be on the lookout for it. It is a very widespread problem.
There are people in our community better versed in this topic than I. Recently, some good friends and colleagues recorded a TV program on the use of antipsychotic drugs in the elderly. I highly recommend it to anyone dealing with an aging loved one. It features: Elder Law Attorney Claire Curry, Dr. Mary Evans, geriatrician and president of the Virginia Association of Medical Directors, nurse Love Berkley, long term care specialist, and Emily Chewning, whose father suffered from dementia, was subjected to the misuse of antipsychotic drugs.
This is a widespread problem and happening in our own community every day. If you suspect your loved one is improperly being prescribed antipsychotic drugs, please contact me and I will be happy to help you sort through what can be done or refer you to an appropriate agency that you can work with to make sure your friend or family member is safe and being appropriately medicated.
Caller: Oh, uh…(gets over surprise that lawyer answers her own phone) Can you tell me how much you charge for a PoA?” <Power of Attorney>
Me: “Well sure. What kind of PoA?”
Caller: “Oh, so I can help my mother”
Me: “I see. To do what exactly?”
Caller: “Um, well I need you to write a PoA so I can take care of her. You know, pay her bills – that kind of thing”
Me: Well, you should understand that its your MOTHER that needs the PoA – not you.”
The conversation either ends right there or an appointment gets made.
If the conversation continues, one of the next things that’s going to happen is a meeting with Mother – to see if she is on board with making this adult child her Agent. Please note: a person is not a “POA” the person that grants a POA is the “Principal” and the person that receives that power is their “Agent” – an old fashioned term used to be an “Attorney-in-Fact”) I will need to see that Mother is ABLE to name an Agent. That is to say, does she have the mental capacity to understand what she is doing? That’s a whole ‘nother blog post that I’ll save for another day.
Soon, the person who initially called is likely to get tangled up with sisters and brothers. Or other relations and interested parties. Mother becomes collateral damage in a Sibling War.
These scenarios play out in a bunch of different ways. Often one or more of the adult children are geographically distant. Sometimes one of the adult children is saddled with the day to day worries and concerns associated with caring for a very frail and failing mother.
Often, the present day stresses and tensions in the family are exacerbated by what I call “sandbox issues.”
As adults, all of us carry the baggage of our childhood relationships with us. And try as we might to be rational adults, inside of us lives a hurt, anxious, resentful or angry child of about 8 or 9 years old just waiting to replay all that bottled up angst.
“Mom always loved you more.” “Dad never understood me” “You got to go to college and I didn’t” “You were always the blacksheep” “You’re more like Mom and I’m more like Dad”
Then there is someone I call “New York Sister.” Or Brother. Or cousin, or friend. We all have one. And they don’t necessarily live in New York. They live far away. They have important jobs; full lives; kids to take care of; projects to manage. They do what they can. Call every other week. And once a year, they fly in to visit Mom & Dad and to give caregiver a break. New York Sister has good intentions. But her life is, well, different. She does yoga and pilates 4 times a week and she is just certain, 85 year old mom’s arthritis would clear up if Mom would do yoga and pilates with her while she’s there. She also eats Greek Yogurt and fresh fruit for breakfast every morning. She is appalled that mother – who grew up on a farm, got up with the sun and who has eaten a country breakfast every single day of her life for 85 years – is still having biscuits & sausage gravy or bacon & eggs every day! That caregiver you hired (that Momma loves)? What do you mean she’s not from an agency!? And you’re clearly paying her way too much and wasting mother’s money.
You get the picture. New York Sister, in a short week or 10 days, has turned the entire house on its head. Nothing is more counterproductive disturbing an elder’s routine. And do NOT mess with their meals or mealtimes! That is sacrosanct.
New York Sister flies back to her life in Metropolis and leaves behind the wreckage of a routine out of whack, a caregiver upset, the pill box screwed up, the church social missed and a very confused and upset Momma. New York Sister doesn’t realize that her visits are not exactly fun for everyone. She also cannot understand why her advice from afar after such visits is taken with something less than, ahem, enthusiasm. And can’t understand, why, since she is so sophisticated and hi-powered, why doesn’t she have the Power of Attorney?
Unfortunately, the very people that used to send us to our rooms and sort out our differences are no longer able to do that. As Mom or Dad begin to fail, the roles begin to reverse; we must take care of them; they cannot get caught up in the disagreements among other family members. They have enough worries and aches and pains as it is.
If these were the only issues – emotional baggage among siblings – that would be, well, manageable. A little counseling, a hear- to-heart, perhaps some medication? Maybe and we can all get along and put Mom or Dad’s issues on the front burner and set aside our own to deal with another day.!
Unfortunately, the other big issue that always rears its ugly head is money. I call it the money monster. Mom & Dad’s money. Our money. The cost to care for Mom & Dad and who will pay it?
I frankly have little patience for families at war over an inheritance. Typically, I will refer them out to a lawyer I don’t like and let them deal with it.
Worse are the siblings who are worrying about an inheritance while Mom & Dad are still alive and sometimes even quite healthy with much life still ahead of them to live.
I once had two brothers come to me purportedly seeking advice related to their mother’s care. They kept referring to preservation of her “estate.” I finally had to give them the bad news that there was no “estate” until mom died. And she was very much alive. And until she died all there was to deal with was her money and assets – which were hers. I have to be very clear that their concern was not mother’s estate, but mother’s care. And since mother was not only alive, she was also in full possession of her mental faculties and was quite capable about making decisions about her money (and the disposition of her estate) all on her own.
Adult children frequently do not understand, or are unwilling to accept, that just because an aging parent makes a decision which adult children disagree with, does not make the parent “incompetent” or “incapacitated.” Even if the decision they disagree with is a foolish or risky decision, that does not mean mom or dad cannot make decisions. We all have the right to make bad decisions!
Clients – especially younger clients – sometimes come to me ready to go to court hoping a court will do for them what they can’t get their parents to do. I try to ratchet things down a little bit whebever I can. I explain that going after guardianship/conservatorship is perhaps not the best solution. Nor is it the cheapest. Solutions short of litigation include simply have a third party talk with Mom, Dad and/or perhaps the Warring of Siblings (and other interested parties). Formal mediation sessions might be one avenue. Another is simply trying to communicate with the other parties on behalf of Mom or Dad.
It can be a very dicey challenge for me to deal with such situations. I must be clear about who my client is. Often it is not the person paying me (usually one of the adult children or other relatives). My client is the frail or elderly parent who is typically caught in the crossfire. Often people have trouble understanding this concept. An adult child expect me to “take their side” if they are paying the bill. I try to explain to them that it is much like the insurance company who pays the legal bill to defend an insured party. The lawyer is paid by the insurance company to represent the guy that was in a car accident. Lawyer doesn’t represent insurance company’s interest (necessarily), lawyer represents driver. Same goes for me. In my case, “driver” is Mom or Dad in whose interest I am advocating regardless of who pays the bill.
My job is not to hand over a Power of Attorney to someone who does not understand that what they are getting is not “power” over Mom or Dad. My job is ensure that adult children undertake rather a serious dose of responsibility. Responsibility to look after Mom or Dad’s best interests no matter the cost to son or daughter’s “inheritance.”
Delighted to announce that I am now a member in good standing in the National Academy of Elder Law Attorneys (NAELA) and also in the Virginia Chapter (VAELA).
Among other things, my acceptance into NAELA provides me with the premiere resources to stay abreast of the most recent developments in Elder Law. That means I can continue to be your “local” expert in these fast changing times.
You can visit NAELA’s website — there are many resources there non-member, non-lawyers) by clicking here.