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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The Use and Abuse of Antipsychotic Drugs in the Elderly

The use and abuse of antipsychotic drugs, particularly in the elderly, is a widespread problem.

Physical restraints are generally illegal, especially in the aged and frail because it is so easy injure them using physical bed restraints (tying them to the bed!) They have frail bones and its easy to tear their delicate skin. Not to mention it is degrading and inhumane.  We just don’t tie people up in nursing homes anymore.

Nevertheless, institutions are often horrifically understaffed and those on staff are overworked. So institutions have figured out ways to control their sometimes unruly residents by tying them down invisibly. Particularly those residents suffering from Alzheimer’s or other forms of dementia. Chemical restraints. Specifically, medications that sedate and  make the residents more docile, or simply sleep through the day. The most commonly prescribed of these are antipsychotic drugs – Seroquel, one of the newer class of antipsychotics is one example. Haldol, an older class of antipsychotics is another. There are long lists of these and similar drugs that the FDA has warned should NOT be used in the elderly or dementia patients.  Indeed Seroquel, Haldol and their many “cousins” are dangerous for the elderly and dementia patients especially. So much so that the FDA has mandated a “black box” warning about the use of such drugs. in the elderly.

If you are looking after or advocating for an elder, particularly if they are living in an Assisted Living Facility or Nursing Home, you should be aware of this issue and be on the lookout for it. It is a very widespread problem.

There are people in our community better versed in this topic than I.  Recently, some good friends and colleagues recorded a TV program on the use of antipsychotic drugs in the elderly. I highly recommend it to anyone dealing with an aging loved one. It features:  Elder Law Attorney Claire Curry,  Dr. Mary Evans, geriatrician and president of the Virginia Association of Medical Directors, nurse Love Berkley, long term care specialist, and Emily Chewning, whose father suffered from dementia, was subjected to the misuse of antipsychotic drugs.


This is a widespread problem and happening in our own community every day.  If you suspect your loved one is improperly being prescribed antipsychotic drugs, please contact me and I will be happy to help you sort through what can be done or refer you to an appropriate agency that you can work with to make sure your friend or family member is safe and being appropriately medicated.

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On Death and Dying Well

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.

ICU Death
This is what dying in ICU might look like

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!

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“Choosing” a Nursing facility- troisième partie

It’s been more than a week, I know. Things got a bit busy and since I am chief cook, bottle washer and everything else around this office, I have to set some priorities. Blogging is way down the list when clients are demanding my attention. Would you want it any other way if you were my client?

Well, let’s return and see how Mom has fared in the nursing home shall we? When I left off in my last post, Mom had just been “de-certified” from Medicare and moved to “unskilled” nursing bed.  She is no longer receiving intensive therapy.

As the days and weeks go by, Mom becomes more depressed and hopeless. She seems dull and lifeless. Even her hair is limp and lifeless. When you visit she is often still in bed even though it’s the middle of the day. She’s not had a bath or brushed her teeth even.  When you visit she is both irritable and angry, or cries and begs you to take her home. Visits become something you dread.  More and more your visits are shorter and farther between.

One night, you get a phone call from the nursing home. Mom has taken a fall and hit her head. They think she’s okay, but it’s the nursing home’s policy that anytime someone falls and no one sees it happen they must automatically transport them to the E.R. to have them checked out.  At the time of the accident, your mother was in pain, confused and panicked. As the EMT’s arrived and tried to put her on a stretcher and into the ambulance, she started to shout and became combatative. In order to safely transport her, the  EMT’s needed to calm her down to prevent her from hurting herself (or them) so she is given a powerful tranquilizer and immobilized onto a stretcher.

Before you are able to arrive at the hospital, Mom is taken for an MRI. She is placed on a moving table and strapped down, then she is  slid into a large cylindrical machine for 45 minutes. The machine makes all manner of very loud clanking, buzzing and ringing sounds while disembodied voices tell her to lie perfectly still. She comes out dazed, completely disoriented and not sure where she is or what is happening.  It’s now 3 a.m. and the doctor decides to keep her “for observation.”  They give her a drug that is meant to help her regain herself, an antipsychotic called Seroquel.  It also acts as a sedative and knocks her out for the night.negative effects antipsychotics

The next morning she awakes and you are at her bedside. She has little or no recollection of what happened or why she is there. The doctor says she may have a concussion and wants to keep her for another day. She complains of pain in her hip and has severe bruising on her face.  The last thing she remembers is at the nursing facility. She recalls ringing the call bell repeatedly for assistance to go to the bathroom. She says that no one ever came and her need became so urgent that she decided to get up herself rather than wet the bed. She thinks she may have had an accident on the floor and may have slipped on the wet floor. She must have fallen then. She recalls nothing else.

Meanwhile, back at the nursing home, the business office tells you that if your mother doesn’t pay for her bed, that is, put  a “bed hold” on it,  they will discharge her. With mother in the hospital again, your boss complaining that you’re taking too much time off, and the kids needing picked up from school,  you can’t worry about this and set that aside so you concentrate on the urgent needs like the kids and mom in the hospital.

As it turns out, Mom has only bruised her hip and does have a concussion but its mild.  However, the neurologist who treated her after the MRI of her head has also diagnosed her with vascular dementia (brought on by mini-strokes) which, while relatively mild now, will get worse over time. She ends up staying one more night in the hospital under observation.

The discharge planner comes around the next morning and starts discussing plans about where to send mom now. Come to find out that her bed at the nursing facility is now gone. Her belongings have been packed up and stored. She was “discharged” from the nursing facility to the hospital.  However, the hospital never “admitted” Mom as an inpatient. She was only there on observation.

While this may seem to be mere bureaucratic technicalities,  they have very significant consequences.

To discharge your mother to a nursing facility now means that she will NOT be eligible for Medicare for any rehab because she did not have the requisite 3 night inpatient stay  she was merely there on observation..  Mother’s resources are nearly tapped out for privately paying for long term care. She has no long term care insurance. No Veterans or other benefits. That leaves very few options. In such cases, the only choice may be to find a “Medicaid” bed.

Medicaid rates (the rate at which Medicaid reimburses a nursing home) are substantially lower than the private pay rates. If a person comes into a nursing facility while eligible for Medicare treatment, the reimbursement rates are higher.  But if a person has fewer resources and will be quickly dependent on Medicaid – public assistance – most nursing homes are reluctant to take them.

Nursing homes typically want to bill every penny they can to Medicare or other 3rd party source (supplemental, long term care insurance etc.) and/or if they can, they want the person to privately pay (out of their own pocket).   These sources are usually quickly depleted by the monthly rates which average about $7,000 a month.

In your mother’s case, she used Medicare in her initial admission following the stroke, thereafter, she paid from her own funds but now that money is almost gone.  Had she stayed where she was, she would simply have depleted her resources and an application for Medicaid would have been filed and she would have stayed right where she was.  But that didn’t happen – instead she was discharged from that nursing facility.

The hospital’s discharge planner begins seeking a facility that will accept a Medicaid resident from the outset – no private pay, no Medicare billing. Almost all nursing homes are “dually certified” – that is, they accept Medicare and Medicaid patients. However, many of them limit the number of beds available to Medicaid patients. There is a therefore a shortage of certified Medicaid beds and the need is great.

But the discharge planner manages to find a bed for your mother after you indicate you can pay their private pay rate for two more months. So off mother goes to a new nursing facility. She is discharged from the hospital (to which she was never actually admitted!)  and transported to the new facility.

Along with the little ditty bag of stuff from the hospital she carries is a discharge order and a list of medications. The med list now includes some things that were not on her regular regimen before. Among them are the antipsychotic medication, Seroquel.  You notice that mom is much more agreeable, calmer and sleeps a lot more.  That seems helpful to you.  What no one notices is that Seroquel – and most of the other medications of this sort – carries a specific “black box” warnings about use in older adults.  The warning reads something like this:

Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Seroquel is not approved for the treatment of patients with dementia-related psychosis

There are many potential negative side effects listed as well. Among them, are the increased risk for falls.

However, in a nursing home, the drugs are not administered in the same form we get them from retail pharmacies. Nurses never see the box or bottle the drugs come in, or the sheaf of fliers that come with them. Nursing facilities get “bubbled paks” for each patient from their own pharmacy or contracted pharmacy. So they never see the warnings.

The new nursing home is older, the carpet worn and dingy, the furniture nicked and upholstery faded. The walls are painted a dull blue and stained and marked up.  It’s noisy, smelly and the only activity that is available on a regular basis is a big tv blaring very old movies and bingo every afternoon. The hot food is served on ice cold dishes and the cold food —  iceberg lettuce masquerading as salad, jello, sherbet, cottage cheese and the like —  is served on steaming hot dishes. Everything is stewed or looks like its stewed. All of the food is either over-salted or completely tasteless.

Mom is very complacent though. She sleeps a lot but doesn’t complain much. She has a lot pain so whenever she asks for it, they give her a narcotic painkiller for which her attending physician has written a PRN order or “as needed.” She is also labeled “high risk for fall” so she is no longer allowed to stand or try to walk and is restricted to a wheel chair and completely dependant on nurses aids to transfer her from bed to chair or chair to toilet.  Her lack of activity and complacency about the food means she as begun to put on weight. She eats and snacks on sweets at every opportunity. To please her, you bring in more such treats when you visit.

The nursing facility is trying to turn a profit. They are limited by the fact that so many of their residents are Medicaid payors only. So, even more than any other nursing facility, such nursing homes attempt to make money by reducing expenses. The biggest expense is staff. They keep staffing levels so low that only the barest of care is able to be provided.

Lately, your mom has been having “accidents.” You mom is not incontinent. She can control her bladder fine but, because she must wait for aids to assist her to get to the toilet on time, she is wetting herself and the bed. Soon she is labeled “incontinent.”   Rather than get her on the toilet on a regular interval, and unwilling to regularly change her and the bed, the aids now put her in an adult diaper day and night. Your Mom has become very docile and complacent on the drugs therefore they have no sense of urgency to see to her, she rarely rings the call bell anymore and never yells as she used to – she sometimes lays in a wet diaper for hours.

A year has come and gone since Mom first had her stroke. Mother’s Day is coming. You decide it would be a good idea to take Mom out for an outing, have a change of scenery, get some fresh springtime air.  When the appointed Sunday arrives, you stop for some flowers at the grocery store and go to the nursing home early to help get Mom up and dressed.  The aid has arrived to get her out of her diaper while you choose something nice to dress her in. Together, you and the aid turn her to sit her up and put her clothes on and to your horror you see large, gaping, raw sore on her tailbone.  It is the size of coffee coaster, red and angry looking, seeping fluid.

Thanks to the lack of repositioning or movement, the constant weight on her backside, the skin breakdown from the urine and lack of cleaning or moisturizing of the skin, your mother has a giant bedsore.

This is completely preventable. Bedsores,(also called “pressure ulcers”) except in very limited circumstances, can be avoided by good skin care, repositioning and constant attention and inspection. Mom obviously has received none of this.

You race down to the nurses’ station and demand to speak to the unit manager. You raise holy hell. The Unit Manager, while sympathetic, is distracted by 3 phones ringing and several call bells going off, nods, says they’ll look into it and blows you off.

Monday morning, you call the director of nursing for an explanation. You leave three messages; all go unanswered.  You call Mom’s attending physician’s office. They tell you they will send out the nurse practitioner to have a look and will call you back.

What are you to do now?

 

Tune in for Part IV!  In which we explore the resources available to help you advocate for Mom.

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“Choosing” a Nursing Facility Part Le Deux: They tried to make me go to rehab but I said ‘no, no, no’

Patient wearing respirator
How we left mom at the nursing home last week….

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.”

Nursing home mom
Mom’s a bit irritable, hopeless and depessed now.

Won’t she?

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

 

 

 

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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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Mental Capacity: Who’s got it? What Happens When You “Lose it?”

I have recently been busy training all manner of folks – from Certified Nursing Assistants, to family caregivers, to Geriatric Care Managers (GCM) to my fellow attorneys (many practicing Family law but not Elder Law) on all aspects of decision making or mental capacity issues in adults, particularly in elders. What it means, what happens when it fails, and who some of the surrogate decision makers are who may properly step into an incapacitated adult’s shoes.

Wanna learn more?   My friend, Elizabeth Swider, CEO Extraordinaire of Care is There, recently taped and produced one training session that I did for her flock of highly qualified Geriatric Care Managers (GCM).  You can watch it for free, here:

Or click on the link below

http://youtu.be/jm1a2iu08n0

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Cash Assistance for Veterans – Help Offset the Cost of Long Term Care

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!

Veteran
This guy deserves some long term care from the country he served!

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.

 Example:

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.

 

FAMILY SITUATION (2013 Rates) INCOME LIMIT MAX BENEFIT (MONTHLY)
Veteran, no dependents $12,465 $1,038
Veteran, one dependent $16,324 $1,360
Veteran, no dependent & housebound $15,233 $1,268
Veteran, one dependent & housebound $19,093 $1,591
Veteran, no dependent, and Aid & Attendance $20,795 $1,732
Veteran, one dependent, and Aid & Attendance $24,652 $2,054
Each additional child $2,093 $174
Widow, no dependent $8,359 $696
Widow, no dependent and housebound $10,217 $851
Widow, no dependent and Aid & Attendance $13,362 $1,113
Surviving child $2,129 $177
Veteran married to Veteran, Both Aid &   Attendance $32,100 $2,675

 

 

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