This blog is not about strangers lurking in an alley.  Nonetheless, nursing homes are routinely “invaded” in the wee hours and weekends, because they are subject to unannounced night and weekend visits by trained teams of Medicare inspectors.

These snoopy night stalkers show up and  “camp out” in the facility for days.  These teams have full authority to review and audit over 180 different items covering all major aspects of care in a skilled nursing facility.  They inspect the buildings, the medical records, the residents, the cleanliness, the staffing hours per resident, and much, much more.  These investigators are there to find deficiencies, note them, and  report them to the Center of Medicare and Medicaid Services (CMS).  The report is used to provide a rating which is available to the public at the Nursing Home Compare website. 

The website lists each nursing home and assigns a quality rating between 1 and 5 stars.  A 5-star nursing home is heavenly! Unfortunately, a 1-star nursing home is a probably a living hell.

CMS has created this rating system to help seniors and their loved ones see behind the scenes and beyond the nice décor to find a safe and nurturing care facility for a frail senior.
 
The most coveted score is a 5-star Medicare quality rating.  That score is received by only 10% of all skilled nursing home facilities.  There are very few facilities who receive such an award even when they are in the luxury market.  It is even more impressive when a facility which accepts Medicaid residents qualifies as a 5-star-rated Medicare facility.  Recently Tower Hill Healthcare of South Elgin, Illinois announced in their newsletter that they had received a 5-star award.  I was impressed!  Tower Hill is a 206-bed Medicaid-certified skilled care facility with a 31-bed Alzheimer’s wing.

In my next blog, you will be introduced to a 33-year-old orthodox Jewish synagogue cantor and  wedding singer, Jeremy Amster, whose leadership skills have earned the 5-star rating.

You can play a big part in delaying and/or preventing the symptoms of Alzheimer’s Disease!

At a recent Alzheimer’s Association event in Chicago, I was surprised to learn that we can make lifestyle choices that can push back against the effects of Alzheimer’s Disease. Dr. David Bennett of Rush Medical Center reported that based on yearly interviews and later autopsy of participants in the 2,400 person Religious Orders Studies, there are people who have the Alzheimer’s Disease cerebral plaques and tangles but do not experience AD dementia, and/or have a delayed rate of decline.

Read on to see how you can choose to model these people.
 
When the Rush investigative team examined the data, it was clear that the best lifestyle models are those individuals who remain active in the areas of physical fitness and use of their mental capabilities, and have a vibrant social life.  A vibrant social network is defined as having more than seven active and significant relationships (friends, family, and coworkers).

People who remain consistently physically active usually have better brain health.  Those who are committed to exercise experience fewer falls, better balance, less brain shrinkage, and a higher level of independence.  For those of you who do not like to sweat, there is still good news.  Physical exercise does not have to be strenuous or require a major time commitment.  However, substantial physical exercise does mean a commitment to the regularity of the activity.

If you combine regular physical activity such as walking with mental activity such as Sudoku, and have an active social interaction such as playing cards with your friends or being involved in volunteer activities, then there is a much higher probability for you to successfully push back against Alzheimer’s Disease.  This is good news, in that most of us want to have this type of a lifestyle—we all want to be fit, have wit, and stay “with it.”  Let’s all get off the couch and go for a walk… or maybe a little hula-hooping!

Last weekend I was blessed to attend the Chicago preview showing of the HBO special documentary entitled “The Alzheimer’s Project.”  This is an exciting joint project of the Alzheimer’s Association and HBO which is designed to give us all new insight and hope that we can push back against Alzheimer’s Disease (AD).  For those of us in Chicago the documentary was even more personal, in that it included a live interview with Dr. David Bennett of Chicago’s own Rush Alzheimer’s Disease Center.  The medical staff and researchers at Rush Hospital are one of the premier teams investigating Alzheimer’s Disease.  Dr. Bennett is the director of a large group study entitled “The Religious Order Project.”

 “The Alzheimer’s Project” focused on some individuals with early-onset Alzheimer’s, which affects people who are younger than 65. We learned several new and startling things.  Most people are aware that Alzheimer’s Disease is a brain disease wherein brain function is progressively destroyed by the emergence of plaques and tangles. Surprisingly, there are individuals whose  autopsy reveals the presence of the AD plaques and tangles, but the individual did not exhibit memory loss during their lives—some people continue to function in a normal manner.  This phenomenon is not yet understood but is currently being referred to as “cognitive reserve.”  The presence of this cognitive reserve gives researchers a hopeful avenue of new investigation. 

In addition, part of the question-and-answer portion of the program focused on current drug therapies.  Today there is not a drug which cures or delays the disease.  Our current drug therapies are limited to enhancing the remaining brain function during the continuing degenerative progression of the Alzheimer’s Disease.  Dr. Bennett told the audience in Chicago that there are numerous medical research and drug trials going on right now which demonstrate new possibilities to not only delay but possibly create a vaccine against Alzheimer’s Disease. There is a high probability that medical science will have these enhanced weapons available to the public within the next five to ten years.  This is great news of a brighter view of aging for  millions of people who would otherwise face the prospect of AD. 

If you missed this wonderful program, you can watch each of the documentary films individually online, by streaming them to your computer through HBO’s website. I highly recommend that you click here to see all of the resources that you can download and stream from the HBO program entitled “The Alzheimer’s Project.”

Years ago, when my wife I announced to her parents that we were expecting our first child, my father-in-law inquired innocently if it was okay to talk about someone being pregnant. He had been raised with rules that made that conversation out-of-bounds. My, how things have changed! These days we need only to turn on the TV to be subjected to conversations about PMS or flagging male libido.

In this time when “anything goes,” I have been surprised to find that there are still some taboos. As an elder law attorney, I facilitate discussions about life, death, and disability—not an easy task because nobody really wants to talk about his or her own death.

Oh sure, people can consider that they are probably going to die…someday. But in their heart of hearts most people can’t believe that they are actually going to die. How else do you explain the fact that 85% of the adult population are without a simple will, power of attorney, or health care directive?  The most obvious answer is that they must not truly believe that they’re going to die.

Although it’s difficult, I recommend that you take the time during the upcoming holidays and family gatherings to have what we call the Final Arrangement Conversation with your family.  A Final Arrangement Conversation should have at least two distinct elements:

1. A written expression of your attitudes and desires for life-prolonging treatment (or lack thereof) in the event that you are incapacitated, have been diagnosed as being terminally ill, or are suffering from a long-term memory-robbing illness; and
2. A written expression of your attitudes, desires, expectations, payment source, etc. regarding your final wishes–how your family should handle your funeral, burial, cremation, religious tradition, probable cost, music, choices of service providers, etc.

When I begin this conversation with clients and their families,  I almost always run into resistance. Seniors (even terminally ill seniors) often say, “I don’t care. Funerals are for the living, so do whatever you want.” But families really want to know how their loved ones feel about these issues. When seniors choose to talk about it, they often find it very meaningful to share their expectations. Once we overcome this conversational taboo, the discussion almost always ends with a hug.

When I was a teen, my maternal grandfather Jerry died from a sudden heart attack at age 60. His death was immediate. Later, when I was a young man, my favorite uncle Jack (Jerry’s son) also died quickly from a heart attack.  He was 58. Now that I am the same age, I worry that I will be hit with a sudden heart attack–just… about… now!  But things have changed, and these days life usually ends slowly.

Stephen Kiernan’s book, Last Rites: Rescuing the End of Life from the Medical Profession reveals that since 1960, the life expectancy of a North American adult has been lengthened by 31 years. This is a stunning change in human life expectancy within an incredibly short time frame. He notes that even in 1978, the most frequent causes of death among adults were sudden–heart attack, stroke, and workplace accidents. Well, death from sudden causes may be down dramatically, but we have not defeated death–only delayed it. We’ve traded a quick death for the long, downhill trajectory of age-related memory and/or mobility losses.

Terry Schiavo famously died without documents outlining her wishes for or against life-prolonging treatment. The ensuing controversy surrounding the decision to remove Terry from life support was a tragedy, and should serve as a wake-up call to the rest of us.  Everyone should create a simple power of attorney (or a living will) appointing a trusted loved one as a health care decision-maker.

However, you should be aware that Health Care Powers of Attorney (HCPOA) and living wills are woefully lacking if you have a diagnosis of long-term illness such as dementia, Alzheimer’s, or Parkinson’s disease. These documents use “triggering language” which creates an authorization to act only when you have been diagnosed as “terminally ill,” which is generally defined as having a condition which will be fatal within six months or less. Doctors do not consider Alzheimer’s or other long-term illnesses to be ‘terminal illnesses’. Patients need a way to make written declarations of their desire (or lack thereof) for antibiotics, tube-feeding, etc. when they are in the late stages of these long-term illnesses and likely afflicted with dementia.

Watching a loved one endure long-term suffering is one of the most terrible experiences there is.  I would have loved to have shared more years with my grandfather and uncle–but when I see friends and clients suffer multiple year declines, it makes me wonder if maybe Grandpa Jerry and Uncle Jack were “the lucky ones.”

Recently, when friend and “founder” Luise May visited our office, Shawn Hunt and I sat down to ask about her experience as a caregiver for her Alzheimer’s–affected husband over the past nine years.  Our goal was to further understand the feelings and experiences of the people our firm strives to help–those serving as caregivers for loved ones with long-term care needs.

One of Luise’s strongest statements was the feeling that “you are trapped! Financially and socially, you are trapped.”  As a caregiver, many choices are simply taken away from you.  The only choice left is how you will respond in any given situation.  Because of this, it is not unusual for many caregivers to experience burnout.

And it’s not only the absence of choices that make you feel trapped, according to Luise, but the lack of control over basic areas of your life.  “You can’t control your schedule. You can’t control your loved one’s incontinence or sleeping times.  You can’t control what they are going to say or what they are going to do. You lose all freedom.”

When we inquired into social activities, Luise told us “I used to try to take Bob with me to concerts, because we both love music.  But eventually it got to the point where it was just too much effort and he didn’t enjoy it anymore.”  We asked if she could invite friends over to her house, but, she said, “It’s just so difficult. What do you say to them? And what do they say to you? It’s extremely awkward. In addition, there are times when Bob became very angry, and because I’m doing the care-giving, I’m right there for Bob to express his frustration.  I didn’t want other people to see that. Remember, you can’t control anything. You lose all your freedom.”

As we listened to Luise share her nine years’ experience caring for Bob at home, we could not help but admire once again all the caregivers out there.  Her story served as yet another reminder of why we at Law ElderLaw do what we do: provide counsel and help to those who lovingly sacrifice their wealth, health, freedom, and careers to provide loving care for a spouse, child, or parent.

Luise May

Law ElderLaw, LLP, is a law firm focused on the issues of estate planning, long-term disability planning, veterans benefits, and Medicaid assistance. Our eighteen staff members are attorneys, paralegals, and other support personnel.  But oddly enough, our firm did not begin with a lawyer.  Rather, our firm began with a phone call from a woman named Luise May.

Nine years ago, Luise May called me with panic in her voice, “Rick, Bob has been diagnosed with Alzheimer’s.  What are we going to do?  Am I going to lose my home? Are we going to lose everything?”

At the time, I was a tax and real estate attorney; I didn’t have an answer for Luise. But Luise and her husband Bob had been friends for years, and I wanted to help her. “Luise,” I said, “I don’t know the answer to that, but I promise I will find out.” The problem was, I didn’t know where to start looking for answers. I wanted to make sure Luise and Bob wouldn’t lose their home, but I had never even heard of the term “elder law.”

Fortunately, I discovered a capable attorney right in my home community who was doing work in what he called the Elder Law Center. I called him and told him Luise’s story, then asked if this Elder Law Center could help people in their situation. His answer was immediate; “Yes Rick, bring them on over.”

We explained that Bob had recently been diagnosed as having some type of dementia, most likely Alzheimer’s. Steve (the capable attorney) reassured my friends that he would work to make sure they would keep their home and control of their assets.  He was not able to prevent them from having substantial costs related to long-term care, but they would not lose everything, as they feared.

After the first meeting, I was stunned at the transformation in Bob and Luise.  They were exuberant. They were reassured that they would not lose their home, and in addition they had found a capable counselor to walk along beside them, serving as a guide as they moved further and further into the valley of shadow and darkness.

As I observed the legal work being done for my friends, I knew that this was the type of law that I wanted to be doing.  Three years later, I made the decision to become an elder law attorney, so that I could help more “Bob and Luise” couples.

Bob and Luise eventually moved to Georgia to live near their daughter who is a nurse practitioner. Bob has been able to live at home for more years than they initially thought possible, and it is only during the last six months that Bob finally needed to move to a long-term care facility.

Bob and Luise remain close and valued friends. Last week, it was our privilege to host Luise in our office. She had come to attend the wedding of my youngest daughter, Catherine. She was kind enough to come and share her experiences as a caregiver for a husband with Alzheimer’s. And we want to share her experiences with you, our readers. Come back next week to read her story here on our blog.

Have you ever had the experience of hearing a brilliant speaker share a truth with you that wrings your gut? The kind of feeling you get when you find out that the car you bought has the worst service record in automobile history, or the company whose stock you bought will be declaring bankruptcy? You double up inside, like you just got punched in the gut. It’s a sick kind of “AH HA! moment.” Well, this is what happened to me while listening to University of Pennsylvania neurologist Dr. Jason Karlawish speak to a group of lawyers about clients who may have Alzheimer’s disease or some other type of dementia.

During the last eight years as an attorney I have specialized in long-term illness.  Every day I learn more about the subtleties and surprises within the elder care journey. At Law ElderLaw we often work with families who have a loved one affected by some type of dementia. As we non-medical people observe folks with memory loss, we assume that the individual is losing his or her memory on a constant downward sliding path.  According to Karlawish, however, that is not the right way to think about memory loss.

Dr. Karlawish taught us that we need to change the way we look at memory loss.  He helped us understand that different brain functions are affected with differing rates of decline. “Attorneys are linear thinkers. You are trained to think in a linear and logical fashion, and so you believe that if your clients can give the correct answer to a fact based question, then they are still capable.  You assume that if they know that 2+2=4, then they are capable of managing their affairs.” He shook his head and stated, “Nothing could be further from the truth.”

It turns out, someone who is suffering from dementia can retain their linear thinking, but lose their ability to comprehend the consequences of what that answer means.

As I listened to him speak, it hit me that this was exactly what was happening with one of my clients. This client was responsibly caring for his wife, but the family was continually calling to tell me that “Bill” was making foolish decisions with money, and it was running out at a frightening rate. But when Bill came into my office, nothing seemed to be wrong; he drove himself, he brought his accounting books and we would go over his records together. He seemed capable of handling all his affairs because he gave me all the right answers. Nonetheless, within the next day or two he would do something as bizarre as hiring an $800 ambulance service to get his wife to her weekly hair appointment. Suddenly I realized that although Bill was able to tell me how much was in his bank account, he could no longer understand the meaning of those numbers.

If someone you know seems to be on that slippery slope of memory loss, but you keep reassuring yourself that they’re okay because they understand that 2+2=4, it’s time to consider that they may not know what the implications of that solution means. If you are perplexed about a family member’s actions, it may be time for a visit to a neurologist.