A Graceful Life – Long Term Care Planning

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”

You can listen to the podcast here: A Graceful Life

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Nursing Homes, Assisted Living or…some alternative?

Multi-generational alternatives benefit everyone.
Multi-generational alternatives benefit everyone.

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 RNS and 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 Healthcare provides 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 orECDC Waiverfrom 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 Model and 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.

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Going Home for the Holidays? Help Them Stay Safe, Healthy and Independent

stay safe

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!

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Sibling Wars: Power of Attorney (POA)? Or Responsibility?

I frequently get calls that start out like this:

Me <answering phone>: “Hi, this is Doris”

Telephone Legal Consult
Call Me. I answer my own phone.
Initial consultations are free

Caller: “Uh, hi. Is this the lawyer’s office?”

Me: “Yes, how can I help you?”

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.

Fighting Kids
“Sandbox Issues” carry over into adulthood

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.!

Money Problems
Lurking behind every problem…. Money Monster

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.”

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“Choosing” a Nursing Home? Bwah-ha-ha-ha-ha!

Lately, I seem to see lots of articles, blog posts and general hot air on “choosing a nursing home.”

hotel check in is not a nursing home
Expectations about checking in to “Rehabilitation Facility”

Bad news for most of you. Very unlikely you’ll get much choice in the matter. I don’t recall ever seeing people walking through the front door of the lobby, followed by a bellcap with their bags as they “check in” to a nursing facility.

No. Here’s how it generally happens:

An elder person has some kind of serious medical issue that lands them in the hospital: a stroke, a fall that breaks a hip, a bout of pneumonia, major surgical procedure or any number of other common but very worrisome things.  When the crisis is past, there remains a period of rest, recuperation and typically, rehab.

By this time, if they have family, they have all gathered round and different people have different ideas about how to care for mom or dad. And what I call the “sandbox issues” have begun. Brother Tom thinks mom should come home with him where his wife (who mother doesn’t much care for) will take care of her til she’s back on her feet. Sister Sue thinks Mom should go to rehab then an Assisted or Independent Living Facility (ALF or ILF) because she obviously can not take care of herself anymore. Baby sister Cindy thinks with a short stay at rehab Mom will be her old self again and can safely go home.  They begin to argue amongst themselves and all the ancient tensions of “mom always loved you more” began to re-surface.  I can assure you that none of this is helping Mom to recuperate.

In the meantime, in some back office, a hospital administrator is squawking at the discharge planner (another name for a caseworker or social worker) that she needs that bed. That beds got to be emptied. Why? Because Medicare will only pay for ‘x’ number of days following (surgery, stroke, whatever) and her x number of days are about up. It doesn’t matter that they aren’t managing her pain well or that she’s not healing as quickly as another might. The formula says x days.  And ‘x’ days is going to be all she gets. (They seem to assume that no one can afford to pay for hospital care privately. And that’s true, most of us can’t, which is why we have insurance)

So, here comes the discharge planner into the wasp’s nest that Mom’s room has become with all the siblings gathered round.  Discharge planner comes armed with a pile of paper including one that lists all the home health, skilled nursing/rehab (NFs) and even hospice agencies in a five county area. By giving you this incomprehensible list, she can say she has informed you of your choices. She tells you that she’s found an available bed for your mom in Acme Rehab and that discharge to Acme is scheduled for tomorrow as soon as the doctor writes the order.

Kids are non-plussed and immediately set aside their ideas (for the time being until “I-told-you-so time comes around) and begin to organize around the decisions made for them all (with little or no consultation with Mom). Discharge planner tells you about the rehabilitation professionals and equipment in the Acme Rehab and how great it is and how quickly Mom will be back on her feet.  No one asks any questions, or goes to visit Acme. They start packing up Mom’s nighties and toothbrush preparing for the glorious migration to rehab tomorrow.

In the morning, after a long wait for the hospitalist to make rounds and write the discharge papers, nursing staff to do their thing, you have Mom put on a gurney and transferred by medical transport (another name for an ambulance) to Acme Rehab.  In the meantime, because you think you’re leaving any minute, Mom misses bath, breakfast & medication.

When you arrive at Acme, Mom is wheeled into the facility still strapped to the gurney.

Patient wearing respirator
What mom will probably look like arriving at the nursing facility… ooops “health and rehabilitation center”

All she sees on the way in the building is the ceiling and light fixtures and the chin of the guy who hasn’t shaved for several days and the overhang of his beer gut while pushing her down a rather smelly hallway. Food smells and um, worse smells, assail their forward progress. Medicine carts, food carts, laundry carts, block the halls or rattle past. The gurney takes a sharp turn past a nurse’s station where several people in scrubs are talking on the phone, writing in charts, dialing the fax machine and basically impervious to the person flying by on the gurney.

You, in the meantime, have been ushered into the business office or admissions and are seated at a table across from a new face. There’s a stack of paper in front of them and a couple of pens. This person smiles ingratiatingly, turns the stack to face you and pushes it across toward you along with one of the pens. He or she starts flipping through the pages and ‘explaining’ at warp speed what they are. Periodically they put the pen in your hand to have you sign something. And, obedient child that you have momentarily reverted to, you acquiesce.

Meanwhile, in your head, all you’re hearing is the sound like Charlie Brown’s teacher in the cartoons “Mwah-mwah… mwah mwah, mwah mwah. Ok? “  “Sure, yeah, okay” as you sign the last page.  Also running through your mind is, “Where have they taken Mom?” “Is she going to be okay?” “She didn’t eat anything this morning” “Did we get the discharge orders from the hospital?”I have to call Mom’s brother Ike and let him known she’s here”  “Have we made the right decision” (when you should be asking, “Did WE make a decision at all?”

Of course, if you heard anything at all from the admissions person or saw anything that you signed, you are extremely unlikely to remember it even a few hours later. And where did you put that copy they gave you?

How do I know? Because, when family members come to me and ask me to represent them and I look over the contract they brought with them,  I ask them, “do you know you agreed to ….?  (pick any number of things). They give me shocked look and say “I never….?” And I hand them the contract, point to their signature and confirm that it’s theirs. No one remembers that they agreed to a whole host of things – as just a few example, they contracted  to:

  • waive      the right to sue the facility in court.
  • use      arbitration instead with the nursing facility’s chosen arbitrator;
  • to be “R.P.”      or “Responsible Party”
  • as RP you      agree to pay the bill if Mom can’t (this is not legal, not under Federal      Law or under Virginia Law and you can not agree to it)

Could this have been avoided?

Yes, and more importantly, it could have been avoided at several points:

1)      They discharge planner doesn’t decide where your Mom goes. Your Mom does. Perhaps with your assistance. She also has the right to refuse “the first bed available” and the right to weigh many options. Handing you the list of agencies and options only technically meets the mandate caseworkers have to inform patients of all the options before them. Mom could have gone home with an order for home health and physical therapy. Or she could have gone to outpatient therapy, or she could have gone to any number of facilities.

2)      You do not have to vacate a hospital room because a discharge planner says so. You have to be prepared to pay for it or arrange for payment, but before making a decision, someone should have visited the nursing/rehab center to make sure it was up to snuff. You can check out nursing facilities through Medicare’s “5 Star Rating System” first to narrow down the acceptable options. Since Medicare regulates nursing homes, they collect extremely detailed data, including staffing levels, quality measures and inspection reports – all of which you can look at online. They put it in pretty accessible form to make that easier. (see  http://www.medicare.gov/nursinghomecompare)

3)      Upon arrival at any facility, the emphasis should be upon getting Mom settled into her new surroundings. She is probably scared, in pain and unsure of what to expect next. All the paperwork and contracts can wait. And the contract does NOT need to be signed right now by anyone, not you, not your mom.  In fact, I often tell caregivers (adult children, Powers of Attorney etc.) not to sign the contract at all. Mom can sign it and it can be signed later after someone that is in full possession of their senses has had an opportunity to look it over. You, as caregiver are stressed, tired and not clear on what’s happening. Your mother is sick, medicated and possibly suffering from mild dementia or psychosis (both can be caused on a temporary basis by long hospital stays). Neither of you is in top form to sign an important legal document that is likely to have very serious consequences.

Is there more? Oh there is much more. Stay tuned for Choosing a Nursing Home. Part Le Deux

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You Have a Right to Make Health Provider Choices

It’s Christmas eve and I’ve just been catching up on some back reading, including our local weekly papers, The Hook and Cville Weekly.   In the latter publication, there was a reference to an article in the November 27 issue regarding hospice. I noted in the Letter to the Editor that only Hospice of the Piedmont was mentioned. The article, Long journey home: A family’s experience with hospice care, is quite lengthy. And it is perhaps one of the best articles I’ve ever read on Hospice care. *

There is no doubt that hospice does wonderful work. What concerned me about the article was that they limited themselves to people having experience with only a single hospice agency – Piedmont. They interviewed workers from Piedmont, doctors from Piedmont and families served by Piedmont. One begins to wonder if this were a paid advertisement or editorial content!

In fact there are several hospice agencies in this area that patients and their families might choose from. In addition to Piedmont, Legacy Hospice is a dedicated hospicae agency. In the Waynesboro/Staunton area, Augusta Medical offers hospice service.  Also, most home health agencies, Asera, Interim, Medi-home health and others all offer hospice care. Some nursing facilities have their own hospice care units.

My beef is not with Piedmont. Not at all. My problem is that the article perpetrates a a different problem. That is, that many patients and families do not realize that they have choices regarding care providers. More importantly, they have the RIGHT to be informed of the choices available.  So for example, if you are a patient at Augusta Medical Center, and you are preparing to be discharged home and need home health care, AMC is required to advise you that you have choices among several home health agencies – which may include AMC’s own home health care (or hospice) agency but AMC may not limit a patients’ choices by failing to inform them of the available providers.  Typically, hospitals simply provide a bewilderingly long printed  list of healthcare providers. Either overtly or covertly, discharge planners and social workers are instructed to direct patients to a particular agency – usually one affiliated with the same hospital or its corporate entity.

This is wrong.

Patients have the right to make choices in their care planning. There are costs to think of and social issues that may impact one’s choices. For example, lets say you live in Stuart’s Draft (“over the mountain”) and your father has been transported to UVa. Medical Center after a serious stroke. After the initial crisis is over, UVa begins to make plans to discharge your father to a rehab center since he has lost the ability to walk and his speech and ability to swallow are severely impaired from the stroke. The discharge planner tells you that the first available bed is at Trinity Mission in Charlottesville. Very likely, you are unfamiliar with Trinity Mission and don’t even know where it is. But you expect the discharge planner – who seems very nice and caring – to take care of things for you. No doubt they have the best of intentions.  However, Trinity Mission is a nursing home north of Charlottesville and not easily accessible to you, since you will have to drive 40 minutes each way or more to see your father.

There are plenty of nursing and rehab facilities in the Waynesboro/Staunton area that would be closer and far more accessible to you. Placement in one of those facilities means you could drive yourself and your mother to see dad on a daily basis and you could both help encourage him to do his therapy, eat, talk, visit, walk and just generally spend time with him to keep his spirits up.  However, if you don’t know that you have choices in your care providers, you will simply assume that the UVa discharge planner “knows best” and simply acquiesce.

Soon, your father is in a nursing home that you, your mother, friends and other family cannot easily get to; father is alone most of the time; gets dispirited, lonely and depressed; he begins to refuse food, only reluctantly participates in any activities including physical, occupational and speech therapy. After a time, father has deteriorated to the point where he is unlikely to ever come home since he requires 24/7 care.

The story doesn’t have to end that way. You have choices. You can insist that the discharge planner find a bed in a facility closer to home. You, your mother, church members, co-workers and others can visit your dad regularly. His spirits are buoyed by the interaction, encouragement and good wishes he receives. He works hard to go home and ultimately regains much of the ability he lost due to the stroke so that he can go home even if it means having some additional care in the home.

Again, you have choices. The hospitals and healthcare providers are required to tell you what they are. But you should also ask. Don’t rely on others to help you make informed choices.

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*In the interest of full disclosure, I have to disclose that my partner is a Nurse-Case-Manager for another hospice agency here in town (not Piedmont). She has no ownership or profit interest however, she is a salaried employee.

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Hospice Care – And Now a Widow

For the past three years, I’ve watched my father struggle with age and debilitating disease.

henry
Henry Rosenberg Gelbman
July 31 1934 – November 29, 2012

My mother, his primary caregiver, also declined over this period, the emotional and physical strain causing her to age and struggle more than she might have otherwise.

We were blessed to have the assistance of several paid caregivers who not only took care of my parents, they loved them, sang to them, prayed for them.

In early September, my father was diagnosed with stage 5 kidney disease – e.g. kidney failure.  Because he was not a good candidate for dialysis and certainly not for a transplant, my father decided that the quality of life he was enduring was not something he wished to prolong, we arranged for hospice to come in. With his diagnosis, he finally met the criterion: a terminal diagnosis (kidney failure) and the likelihood of dying within 6 months.

Many people don’t know that hospice – a different but additional layer of care – is completely covered by Medicare & Medicaid.  (not room & board, but all the care). That meant that Dad received additional visits from and RN, a social worker, CNAs to help bath, feed, massage, dress him, change his colostomy bag and more.  All care that my mother could be relieved of on a pretty regular basis.

Another thing people don’t seem to know about hospice is that even though the certification indicates that the patient is likely to die within 6 months, they may have longer. At the end of six months, the hospice agency can simply recertify them for another 6 months.  Art Buchwald, the bestselling author and columnist was on hospice for over 2 years and was ultimately DISCHARGED from hospice because he got better.

Like Art Buchwald, my father also got better when admitted to hospice. There were no more arduous trips to doctor’s offices. They took him off many medications (many of which had deleterious side effects) and the increased hands-on personal care was terrific for his mental and physical health. Hospice paid for a hospital bed in the home. And to avoid pressure ulcers, it also paid for a special inflating mattress to alternate the pressure spots. It paid for pain medication & administration; it paid for medication to manage symptoms (like nausea, itching and others).

My father passed away after a sudden sharp decline on November 29th.  Hospice was there to pronounce him and their social workers and CNA’s were there to help us with the emotional and practical issues.

My mother is now a widow. And she has many practical and emotional hurdles to overcome.

Now, the hospice bereavement counselors are staying in touch with my mother who finds herself, after 56 years, suddenly alone. After all those years, she finds herself with no one to take care of; and not sure how to take care of herself. A host of financial, practical and life questions lay before her.

Like many adult children, and not just an elder attorney, I find myself in a position where the roles are reversed – the children are now parenting the parents.

I’m honored to take on that role (with my siblings). I’m grateful for the assistance of the professional caregivers – both private and professional – who have assisted us in these long months of transition.

Rest in Peace Dad, your wife will be well cared for.

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Potentially Significant Change to Medicare Benefits

Your Medicare Benefits may be changing — for the better!

I’ve been reading about a case in Vermont, a class action suit, that is poised for a settlement agreement (awaits judicial ok) that would significantly alter the benefits available under Medicare for skilled care and therapy services. For the better in my opinion.  I still have some questions about how this would apply to patients in skilled care and unskilled care facilities. Still doing some research on that. I hope to have a more detailed post soon once those ambiguities have been cleared up.

In the mean time however, if you have been denied coverage for skilled care or therapeutic services — or have a loved one that has (or will soon be “de-certified”) you should be following this development:

SETTLEMENT EASES RULES FOR SOME MEDICARE PATIENTS (NYimes)

… stay tuned to this blog for more details

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