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!
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.
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!
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.”
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!
What is “Respite Care?” Home Care. Health Care. Nursing Care. Most of us can understand these terms.
But what is “Respite” Care? Some new marketing buzz word? Well, to be honest, Respite Care is partly a marketing buzzword, but there is some substance at the core. Because caregiver burnout is real, and respite care is how to prevent it from overtaking you.
I just got back from my own vacation so this is on my mind as I begin to “re-enter” my day-to-day routine.
We take vacations to rest, to recharge our batteries. Even if we take a very active vacation – kayaking, mountain biking, hiking, skiing or just lounging at a beach or pool (that’s my style!) – it is the mental and physical break with our normal routine that allows us to come back refreshed and ready to fight the good fight again.
For caregivers – especially when family based– it is rare to get a break from an often grueling routine. The caregiver’s role takes a toll mentally, physically – even spiritually. And often the need for care is 24/7, 365 days a year, holidays, and weekends, year after year.
Caregiver stress – and Caregiver Burnout – is real. These conditions can have very negative side effects. They can lead to neglect or even abuse of the one needing care; they can lead to physical and mental decline or breakdown for the caregiver.
This is the situation that Respite Care is meant to prevent.
It means exactly what it sounds like, but it is for the caregiver, not the one for whom they are caring. Caregivers need and deserve a break. But how is that to be accomplished? You can’t just put out a bowl of fresh water, some dry food, clean litter pan and leave for a few days.
There are many solutions to this problem. At the simplest level, other family members can (and should) step in from time to time to assist a primary caregiver. Primary caregivers are frequently equally frail as their spouse and themselves may be in precarious health too. Adult children should be watchful for this and be willing to assist or take over if they can. We, as children, are so accustomed to Mom in her accustomed caregiver role that we lose sight of the fact that not only can she not care for Dad, she may not even be able to care for herself adequately anymore. Not without help anyway.
Alternate, unpaid family members are not always possible or practical even on a temporary basis. Sometimes there are no alternative family caregivers. No children perhaps, or difficulties have led to estrangement. Or the one needing care has outlived all the possible or willing family members.
A second possibility is to hire a paid caregiver. Most agencies now offer “respite care” services. You can hire an agency “sitter” for a few days (or even hours) while the primary caregiver takes a break – go shopping, go fishing, have lunch with the girls, play a round of golf, go to religious services, or just have some peace and quiet to read a book without the constant demands of a frail, sick or demanding elderly person.
A third solution is Adult Day Care. Most Senior Centers (Waynesboro, Charlottesville) and Agencies on Aging (in Charlottesville/Jefferson District, that’s JABA in the Shenandoah Valley, that’s VPAS ) offer programs during the day where elderly people can go and have a meal, visit with others, take part in activities at whatever level their physical health allows. While in the care of the Day Care Provider (some have transportation and even pick up or drop off the one in need of care, or, in our area, transportation arrangements can be made through JAUNT (434) 296-3184) While there, the caregiver can take the entire morning to clean the house, work in the garden, put their feet up and watch “Ellen,” have a second cup of coffee and drink it while its still warm. Or have a whole afternoon free from having to prepare a hot meal and feed someone. Sit down with a bag of candy and watch Judge Judy without interruption. Or get on the phone and talk with a friend or someone else for a good long time. Take an uninterrupted nap. Read the newspaper front-page to the comics without having to get up 10 times.
Admit it, sounds good just to have a break for a morning or afternoon doesn’t it?
So…. How would you like the idea of getting an entire week’s respite? Two?
Its possible. Many Nursing and Assisted Living facilities now offer Respite Care. Have Mom or Dad (or grandma or pa, or Uncle Joe or Aunt Jane?) visit a nursing facility – just for a week. They get a break from their normal routine too and you get a solid vacation. They’ll get all their meals, medication, assistance with baths and getting dressed and maybe a little exercise (at the PT gym?) They may get some intellectual stimulus of new faces and places. Take part in some activities provided by the Recreation Department. They might even enjoy any of the many religious, musical, teen volunteers, pet handlers or myriad other groups that visit such facilities on a regular basis.
Honestly, some of these solutions, especially the last, are likely to set you back a few bucks. (though Adult Day Care are usually pretty cheap as they are often subsidized in whole or in part by gifts, grants and government).
However, even if you really are hard up and having trouble making ends meet, there may be a respite solution for you too. In Virginia, contact the county or social services offices (the folks that administer Medicaid) where you live and ask about Elderly or Disabled with Consumer Direction Waiver” (I know, it’s a mouthful! They’ll know it as the EDCD Waiver). Most states will have the same or similar programs. Among the many things they may be able to assist you with is Respite Care.
My own vacation was short. 5 days, and 4 nights. Two days driving. But the beach – even with my frail and elderly mother (she’s 83) – was enough to recharge my batteries AND enough to give my mother’s regular caregiver a break. And while Mom has a hard time getting down to the beach, she delighted in visiting with all my brother’s, sisters-in-law and the grandkids.
It’s amazing how things look brighter and your muscles and joints unwind when you finally unplug.
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 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.