He looked into his wife’s eyes and flatly stated, “I’ll put a gun to my head before I ever go to a nursing home.”  But the sad truth is this:  His wife will be the one to bear the burden caused by his long term care needs and her own aging challenges.

This couple are frugal people who worked hard all their lives.  They lived on two Social Security checks, his modest pension, and minimal investments.  They were able to pay their bills and enjoy simple luxuries—until the out-of-pocket expenses of long term care begin to drain what they worked a lifetime to save.

His wife selflessly provides in-home care for her beloved husband, until eventually the day comes when her strength is not enough to pick him up or keep him from wandering away from home.  On that day, it might be a doctor, a discharge planner, or a policeman who looks into her eyes and speaks the harsh truth to her: “I’m sorry, ma’am. You can’t take care of him by yourself any more.”

This poor woman now faces a nightmare as she walks the elder care journey with a frail and declining husband.  First she learns that neither Medicare nor their health insurance provide any payment for home health care costs.  Later, when her husband must be relocated to a long term care facility, she discovers that neither Medicare nor Medicare supplemental insurance will pay the facility’s $3,000 to $8,000 monthly cost.

Quickly, she also learns that Medicaid is not available because she has “too much money.”   Her husband’s care will be offset by Medicaid only if she and her husband meet stringent income and asset limitations.  If they have assets over approximately $101,000, they must “spend down” their life savings, which Medicaid defines as “excess assets.”  When all excess assets have been spent on her husband’s medical care, then Medicaid will also control her monthly income.  She is restricted to $2,500 per month; any income above that must be used to pay for her husband’s care.

Later, when her husband dies, she receives more bad news.  She loses his pension, and as the “survivor spouse” she loses one of their two Social Security checks.  She has spent nearly all of their assets to provide for her husband’s care, and now she can’t even afford to live in her own home.  The nightmare of long-term care has left her impoverished and stolen her independence.

She will now face her own elder care journey alone.  She will not have the luxury of a spouse who will serve her as she served him.  No one will be there to dutifully care for her at home and to delay the day that she must move to a long term care facility.  She will not have the financial resources that he had, because Medicaid called them “excess liquid assets” and she spent those assets on his care.  As a single person, she will not be provided with assistance by the State of Illinois or the federal government until she has become impoverished to the point of a paltry $2,000 or less in total assets. The indignity committed against her does not stop there, for now she must sign over all her income to the nursing home as well, except for a miserly “personal needs allowance” of $30 per month.

The loving wife who faithfully cared for her husband is now out of money and out of options.  $30 per month will not even give her the privilege of having her hair done.  She is alone—and living the nightmare of long term care in America.

Photo by Lisa Wiltse of the Sydney Morning Herald

This is a reprint of a blog post originally published November 7, 2008.  Although almost 2 years have passed, many parents of disabled children still live in fear of what will happen when they can no longer serve as primary caregiver for their child.  We hope that reprinting this blog post will help  these parents understand their options for the future, and bring them some peace of mind.

My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.

Not everyone becomes an empty-nester. And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled. Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent.

This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them. Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age. But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents. In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well. This raises new challenges for those parents and their children.

This type of disability is really quite common. “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments. Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently. Most of these physical and mental issues are in evidence long before a child reaches the age of 22. These disabilities will last the lifetime of the affected person.

So how can a parent be assured that a disabled child will be taken care of after the parent is gone? Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling. This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child. Click here to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.

Recently I was sitting down with some very good friends when a cell phone rang.  A look of worry shot across my friend’s brow as he looked at me and apologized, “I’ve got to take this call… my Dad’s missing!  He’s gone wandering…”  I could not help but listen as he spoke to relatives several hundred miles away.  He murmured hopefully, “Maybe they’ll bring Dad to the shelter.”  After saying goodbye he looked at me with pain across his face and said, “Nobody knows where he is.  He’s got Alzheimer’s, and my mom can’t keep him in the house anymore.”  About 30 minutes later he got the call that Dad had been found and everything was okay—this time.  As I sat there, I wondered if my friend knew of some of the resources available to help keep track of vulnerable or wandering loved ones—and it occurred to me that our readers may also be unaware of some of these resources.

One of the reasons that having a wandering relative afflicted with dementia is so frightening is that they don’t act (or react) in the same way that a typical lost person would.  A helpful page at Ask.com explains how wanderers with dementia will not cry out for help or respond to your calls to them, nor will they leave many physical clues to lead you to them.  What a wanderer is likely to do is go to an old place of residence or a favorite location.

Luckily, there are resources out there to help with wandering relatives—so you don’t have to just wait nervously by the phone.  One of these resources is the Medic-Alert Safe-Return program detailed on the Alzheimer’s Association website.  This program provides 24-hour nationwide assistance and supplies members with an individual emblem engraved with the program’s emergency response number.  If you want to try to stop wandering at its source, the Mayo Clinic has a page detailing some of the reasons why elderly relatives may wander, and includes some suggestions on how you might prevent it.  But remember—no matter how much you do, Mom or Dad may still wander.  Don’t blame yourself if it happens!

The best thing to do is be prepared for the occasions when the wandering does happen.  Use the resources provided above, and keep other relatives and caregivers informed.

About a year ago, for reasons I can’t really explain, I wanted to find out what books specifically for children had been written about Alzheimer’s.  It was easy to find a book called What’s Happening to Grandpa? by Maria Shriver.  When I went to Amazon.com to find out more about Maria Shriver’s book, I saw a review that said that “Dr. Ann Frantti wrote a book entitled Grandma’s Cobwebs several years ago on the same topic.  Unfortunately, Dr. Frantti doesn’t have the benefit of Ms. Shriver’s ‘star power’ in terms of getting publicity about Grandma’s Cobwebs, but her book is excellent.”

Once I saw that quote, I was intrigued at the idea of finding this “lost” children’s book, Grandma’s Cobwebs.  The book is out of print but was available through an online used book service.  I bought the book for $135 (don’t tell my wife, Rose).  Once it was in my hands, I wanted to share it with everyone!

With the help of a very artistic and creative team (Shawn Hunt, Angie Moreland, and Catherine Law), the book is now out of hiding for  you to see.  Go to our new website called www.AlzheimersHope.com.  Click on the link and go to the Alzheimer’s Hope home page, and then look directly to the right of the logo to find an icon which reads, “Featured book—Grandma’s Cobwebs, a story for children about Alzheimer’s disease.”  Click on that icon, and you’ll be taken into the world of Ann Frantti when she was caring for her mother Elizabeth and trying to help her daughter Claire deal with Grandma’s ever-growing cobwebs.

Claire’s world gets turn upside down by experiencing her beloved grandmother’s struggle with memory issues.  The term “Grandma’s cobwebs” becomes a way for Claire and her grandmother to name the intrusive memory loss.

The book was written by Ann Frantti, a gifted educator who recently retired as an award-winning principal of an elementary school in New York.  One of the most poignant lines in Grandma’s Cobwebs is this—“It’s like having my mind filled with cobwebs, and sometimes these silly cobwebs make me so mad!”

Please read and enjoy the story.  I trust that you too will be captivated by the storyline, the illustrations, and the fact that this is a true story written by a woman who knows what it’s like to be part of that generation sandwiched between caring for a beloved parent and one’s own children.

They say that when you meet a person, you know neither who they really are nor the path they have walked.  I am grateful to introduce you to a very inspiring young leader, Jeremy Amster, a wedding singer and nursing home administrator.

Recently I conducted my own personal investigation of Tower Hill Healthcare Center in South Elgin, Illinois.  I wanted to find out how they earned the coveted 5-Star Medicare Nursing Home Quality Rating.  Skilled nursing home care is provided to both private-pay and also quite a few Medicaid-qualified senior residents.  (There are two certainties about State of Illinois Medicaid nursing home reimbursement: it is too little and always too late.)

When I arrived in the lobby, I saw an award to 33-year-old Jeremy Amster called “The Friend of Seniors Award.”  The award states that Jeremy’s leadership demonstrates “quality, creativity, enthusiasm, and care built into every life he touches.”   

Jeremy is the proud husband and the father of Avery, Naftali, and Adir.  His office is an art gallery of the boys’ artwork.  One of his sons told a friend, “My dad helps old people and does payroll.”  The boys are frequent visitors who love to meet and greet the senior residents.  One such visit coincided with the arrival one Sunday morning of some nursing home inspectors.  The inspection team leader suspected that someone had “tipped off” Jeremy, and he was furious!  Jeremy countered by saying, “Do you think I would be here with my 5-year-old son if I knew you were coming?”

Jeremy is very involved in Chicago area Jewish community events.  He tutors kids for their Bar Mitzvah lessons.  He works long hours at Tower Hill—but on Fridays he leaves on time to celebrate the Shabbat.  He quietly stated, “I believe that Orthodox Jews have the luxury of rest.  From sundown Friday night until sundown on Saturday, my wife and sons know that I will be there for them.  My kids know that no matter how busy I am, on Friday evening… Daddy is coming home.”

Regarding the 5-Star Rating, Jeremy credited that award to the ownership and the staff.  He humbly stated, “The secret to keeping great staff is to give people a place to serve and to be proud of.  We have low turnover, strong loyalty, and our team believes in this place.”

Jorie Gustafson, Jeremy Amster and Pam Hilderbrand

Later I asked Pam Hilderbrand, marketing director, and Jorie Gustafson, admissions director, what was the secret to the 5-Star Rating.  They credited Jeremy and the ownership of Tower Hill.  They all agreed when Jeremy said, “Most facilities have a box that all residents must fit in—but we shape our box to fit what our residents actually need.” 

Then they really got to my heart when they told me their “Christmas story.”  “We don’t hold back when we give our Christmas dinner.  Many of our residents will never again go home for the holidays.  So we go all out!  We lavish upon them.  They are encouraged to invite two family members to join them for a sumptuous dinner complete with carving stations.”

As I finished my investigation, it was obvious to me that Tower Hill’s success is due to acting in accord with the Golden Rule: “…you shall love your neighbor as yourself.” (Leviticus 19:18)

**For more information contact:
Tower Hill Healthcare Center
759 Kane St. South Elgin, IL 60177
Phone: 847-697-3310
www.towerhillhealthcare.com

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.

Two weeks ago, at a local hospital, I taught a two-hour continuing education course about advance directives for an audience of hospital administrators, nurses, and social workers.  “Advance directives” are documents such as the Living Will, the Do Not Resuscitate Order (DNR), and the Health Care Power of Attorney.  A primary goal for people who sign these forms is to avoid unwanted resuscitation and other “heroic measures” when there is no hope of recovery and returning to an enjoyable life.

Often, older adults have told me stories of doctors and/or hospital staff who ignored the refusal of life-prolonging care wishes of a now-deceased loved one.  They tell me that they had insisted that their loved one did not want life-prolonging treatment, but nonetheless a doctor ordered feeding tubes, ventilators, and other life-prolonging measures.  I have wondered—is this fear of wrongful resuscitation real or imagined?  The short answer appears to be that the fear is real.

Recent studies show a real “lack of regard” for patient’s preferences in life-sustaining treatment decisions by doctors and hospital staff (National Quality Forum: Safe Practices for Better Healthcare 2009 Update). 

Another 2008 published study (Pieracci) reviewed life-sustaining treatment decisions that occurred between hospital medical staff and their patients and/or their health care agents under advance directives.  The conclusion of the study is frightening.  “Despite patients’ wishes, the indiscriminate use of technology and the lack of communication between patients and health care providers have been shown to result in unnecessary pain and suffering for patients.”  In addition, the study notes that the medical costs of prolonging a dying patient’s life via artificial ventilation and intensive care often range between $11,000 and $36,000.  Another study entitled Support demonstrated that 46% of dying patients received mechanical ventilation in the last three days of their lives.  Many of those individuals never wanted to be on a ventilator—yet they were forced by their physician’s decisions to live on in a state of hopeless suffering.

What can you do to prevent “wrongful resuscitation” from happening to you or someone that you love? 

• Create a written advance directive such as a Health Care Power of Attorney, Living Will, and/or a Do Not Resuscitate Order (DNR) in appropriate circumstances;
• Insist that your advance directives are placed in all of your medical records and that your physician is well aware of the existence of such documents;
• Have “the talk” with your family and doctor to make sure that everyone is very aware of your feelings regarding life-sustaining treatment in the event there is no hope of recovery. This will allow you to get all of your family members “on the same page”; and
• Choose an “advocate” as your Health Care Power of Attorney and/or surrogate decision maker.  That advocate is someone who can look a medical professional in the eye and insist that your wishes be carried out.  I recommend that you look through your family and friends and choose someone who can insist that your desire regarding life-prolonging treatment be respected by the medical profession. 

It’s important to know that there is substantial legal authority for health care directives to be followed.  In fact, it is now considered to be a “sentinel incident” when a hospital performs a wrongful resuscitation.  The Center for Medicare and Medicaid Services (CMS) has emphasized that patients have the right to make decisions regarding their long-term health care, and that those decisions should be respected by physicians and hospitals.

In Illinois you can find the statutory Health Care Power of Attorney at http://www.idph.state.il.us/public/books/PwrOf.PDF .  If you are not in Illinois, just go to Google and type in your state’s name and the words, “health care power of attorney.”

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.”

Connie Schreiner and Rick Law

Celebrating New Year’s Day after a kayak run on the Fox River, I was just about knocked to the floor when I overheard someone say, “I’ve seen some wonderful deaths.”  When I recovered from hearing this statement and recognized the sparkling eyes of the nurse who said it, I asked if I could meet with her at another time to learn about “wonderful deaths.”

Several weeks later I met up with Connie Schreiner, the effervescent and popular Director of Health Services at Provena Fox Knoll, an assisted and independent living community located along the Fox River just north of downtown Aurora, IL. 

Connie and I talked about assisted living and what a wonderful living arrangement it is for residents who no longer feel safe living at home alone or need assistance with medication management or help with routine tasks that, with age or illness, have become more difficult to manage.  Connie and I both liked the idea of being provided three meals a day as well—we considered residency ourselves!

“It is very difficult for a resident to leave the comfort and familiarity of his or her home and make a new home somewhere else.  Therefore, we make every effort to ensure that they can live the rest of their lives at Provena Fox Knoll,” said Connie.  “When our independent living residents can no longer live independently, they can transition to assisted living.  When illness causes a resident’s health to decline, or a resident is diagnosed with a terminal illness, the opportunity exists to contract with palliative or hospice care.  It is not uncommon for a resident to tell us that they don’t want to go to the hospital again.”  One resident said to Connie, “You know, I’m 95 years old and don’t want to see the inside of a hospital again.  If my time comes to be with the Lord, then let it be.”

As Director of Health Services, Connie provides residents and family members with the basics of hospice care, specifically:

• That it is important for the resident and the family be comfortable and in agreement with the decision to elect hospice care.
• That the resident’s primary physician must agree and write an order for hospice care. 
• That certain criteria must be met to qualify for hospice.

Connie then recommends they contact Provena Home Care-Hospice for an assessment and the details of care. 

Hospice provides lavish support for both the ill person and his or her loved ones.  Hospice care includes nurses, nurse aides, social workers, and pastoral care—all who work alongside the family and the Provena Fox Knoll staff in support of the resident.  In addition to frequent visits, a hospice nurse is always on call to ensure needed care and comforts are afforded the resident—not only managing physical well-being through medication, but also caring for emotional and spiritual needs. “We currently have a resident on hospice, and her best medicine is a visit from pet therapy.  Provena Fox Knoll is blessed to have three women who visit with their dogs.  It is truly heartwarming to see the excitement on our residents’ faces when these dogs visit,” Schreiner remarked.

Provena Fox Knoll is licensed by the Illinois Department of Public Health (IDPH), as are all assisted living communities.  Schreiner explained that IDPH limits the scope of nursing care that she and her staff can provide.  However, hospice nurses are authorized to provide care that is beyond the scope of their assisted living licensure.  Additionally, most of the hospice costs are covered by Medicare.  

Connie remarked, “The three essential elements to provide a wonderful death are the collaborative efforts of the family, the assisted living staff, and the hospice personnel—which then allows our residents to stay in their home environment with friends and familiar caregivers and peacefully live out the end of their lives.  I have been part of several end-of-life decisions with our residents.  I am richer for it and tremendously grateful to have shared with the resident and his or her family, some wonderful deaths.”

More information on Provena Fox Knoll can be accessed at www.provena.org/foxknoll and Provena Home Care at www.provena.org/homecare.

Artwork by Rhiannon Richardson of the Neighborhood Center of the Arts

What do you do if you’re an elderly parent still caring for a disabled child who can’t care for him or herself?  Last week I wrote about “empty nesters” who have never really had an empty nest. These are parents of children with disabilities such as autism, cerebral palsy, hearing loss, mental retardation, vision impairment, muscular dystrophy, genetic and chromosomal disorders, Down’s syndrome, and fetal alcohol syndrome, to name just a few.  Some disabilities are apparent at birth, and others are caused by accidents or manifest themselves as mental illness later in life, but the end result is the same:  The child is being cared for by a loving parent who worries about who will provide care for that child once the parent is gone.

The most common advice of the attorney who does not practice in the area of special needs trust planning (or what we prefer to call Tender Loving Care (TLC) Trusts) has been for the parent to disinherit the child.  Disinherit means to make sure you leave that disabled child with absolutely no allocation of money directly.  This gives the simplistic idea that one should just leave extra money to one of the other children who will provide care for the disabled child and money management.  Even in the best of families, this is usually a disastrous idea for the following reasons:

• It’s extremely difficult for an individual who receives extra money not to comingle that money with their own, and eventually treat it as their own.  That money would become available in the event that the healthy child becomes divorced or is otherwise subject to loss to a creditor.
• In many families the dynamic is such that the healthy children have some anger or resentment toward the disabled child because that sibling got more attention.  Thus, healthy children may not want the role of caregiver and banker for their disabled sibling.
• And most unfairly, leaving money to one child for disbursement to another child puts a target on the back of the healthy child, in that all complaints and concerns about money will be directed to that individual.

It is the job of the elder law and special needs attorney to assist families like this in developing proper planning so that we can help the parents to create a better way to manage both money and care after they are gone.

A TLC Trust is designed to work in partnership with any public benefits such as Supplemental Security Income and Medicaid.  It is a way for parents to leave money for the needs of their child beyond what public benefits would pay.  A TLC Trust can provide supplemental care for recreation, social activities, pets, special therapies, entertainment, and even vacation opportunities for a child by the use of trust money.  A TLC Trust can also purchase professional care management, which can enhance not only the dignity, but the quality of life of a disabled child. The TLC Trust is a far more loving and caring solution to the challenge of providing for a child with special needs.

Please don’t disinherit your child with a disability; contact an elder law attorney who can assist you in designing a custom plan to meet the very special needs of your child, so that he or she can be given tender loving care after you have passed away.