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.

From right to left: Christ Jarot, Diana Law, Rose Law, Rick Law, Hillary Peck, and Kerry Peck

Recently, Kerry Peck of the law firm of Peck Bloom LLC and his wife Hillary invited us to join their table for the Alzheimer’s Association’s Rita Hayworth Chicago fundraising gala.  I am unaccustomed to attending formal black-tie events, but this one was worth the effort.  Princess Yasmin Aga Khan is the gala’s general chair.  Princess Yasmin is the daughter of the 1940s-1950s screen star and pinup girl Rita Hayworth and Prince Aly Khan.

Rita Hayworth was the first “reel life” glamour star to become a “real life” princess.  (Grace Kelly was the second.)  Unfortunately, in 1981 Rita was diagnosed with Alzheimer’s Disease.  In those days very little was known about both the illness and proper caregiving.  Yasmin left her career as an opera singer to become her mother’s conservator and chief caregiver.  Following her mother’s death, Princess Yasmin dedicated herself to honoring her mother’s memory by promoting awareness of Alzheimer’s Disease and fundraising in the hope that one day there will be a cure.  The annual Rita Hayworth galas, which are held in Chicago, New York, and Dallas have raised millions of dollars.

The theme of the event was “The World is a Circus” and featured acrobats, jugglers, and Cirque du Soleil style acts.  For Rose and me, it was a true joy to attend this fundraiser with our great friends Kerry and Hillary, our daughter and son-in-law Diana Law and Chris Jarot, and other friends of the Pecks.

After dinner we danced until 11, when the raffle winners were announced.  Much to my amazement, my wife Rose and my daughter Diana were both “major award winners”! Seriously, there were over 500 people in attendance and only five raffle prizes.  Rose won #4 and Diana won #5.  I feel like a winner, too!  It is my honor to have attended this event the Pecks and their dear friends.  Thank you, Kerry and Hillary!

Please consider joining us in donating to find a cure for Alzheimer’s Disease.

Sunday morning traffic jam, Crawford Colorado

I had just checked into the Crawford Country Store and Motel—a combination convenience store and motel in Crawford, Colorado.  I had chosen to live at this clean and basic lodging during a five-day horse training clinic on the western slope of the Rockies.  After I found and entered my room, I dropped my bags and headed for the bathroom.  I walked in, turned to my right, and flipped the light switch—nothing happened.  “The light bulb must be burned out,” I thought.  I tried again—and nothing.  Well, I hustled back downstairs to the country store area and told the folks behind the counter that my bathroom light did not work.  A young man looked at me, chuckled, and said, “You need to flip the switch behind the towel.”  My jaw dropped and I asked, “There’s a switch behind the towel?”  He assured me that there was, as he had just used it that morning when he cleaned the room.  Shaking my head and wondering about whomever had decided to install a towel rack over a light switch, I went back upstairs to see if this was really true.  I put my hand behind the towel and felt a switch.  Bingo, the light turned on!

I thought about this for a moment…  I had a low opinion of the decision to place a light switch “behind the towel”—but then it reminded me of how often in life the real answer to something is hidden from us.  The obvious answer is often not the right answer—this is why we need to find those professional counselors, health care providers, and lawyers who know where to find the light switch we need.

Imagine for a moment that you suddenly have a diagnosis of some grave physical ailment.  You would most likely consider immediately hustling off to see experts places such as the Mayo Clinic or the Cleveland Clinic.  Another example: even though we are lawyers ourselves, we often hire other lawyers to give us advice in specific legal problem areas.  When we need to hire a lawyer, we seek out an experienced practitioner with a proven record.  You see, when I need an attorney, I want the best!  We don’t just hire the first person who says, “I’m sure I can take care of you, but I’m going to have to do some research in the area first.”  We hire legal counselors and refer our clients only to attorneys who can readily say, “Oh yes, we handle situations like yours every day.”  Those legal advocates know where the hidden light switches have been placed.

When it comes to dealing with the issues of the frail, elderly, and disabled, Law ElderLaw knows where those hidden light switches are.  Our areas of concentration are elder law estate planning, disability, Medicaid, and V.A. long term care benefits.  Our outstanding Law ElderLaw team turns on the lights for our clients every day!

Atty Brian Rubin and his son Mitch

He looked directly at me and softly said, “Every day I pray ‘the parent’s prayer’—that Mitchell has a long, healthy life, but that Linda and I live just one moment longer, so that no one else ever has to take on the enormous responsibility of caring for our special needs child.”

I was interviewing attorney Brian Rubin of Buffalo Grove, Illinois, who focuses on estate planning and advocacy for clients and families who struggle to find the right answers for their child with special needs.

I recently met Brian when I was invited to join the Special Needs Alliance (SNA).  My own law practice is focused on serving seniors who have either a long-term illness or an adult child with a disability.

He went on to tell me, “My adult life started out fairly normally. After college, I  worked for a large CPA firm, then went to law school at night, and worked for the IRS by day.  I have always had to wear more than one hat.”

Brian, and his wife Linda, never planned to have a law firm which focuses on Special Needs Future Planning—but life often takes an unexpected turn.  In January of 1981, their son Mitchell was born.  When Mitch was five months old, Linda told Brian, “There is a problem.”  Brian says the truth of that statement was the beginning of his going through “the stages of special needs grief”:  denial, self-blame, and doctor-hopping.  Mitch has autism, among other diagnosed special needs.  It soon became apparent that Brian needed to quit his downtown Chicago law practice and stay closer to home.  He also wanted to provide appropriate legal guidance and advocacy for his family and others who faced the same issues.  “In those days, almost no one was doing any special needs trusts and benefits planning.  I was one of the pioneers in Illinois.”

Brian struggled to balance the demands of a law firm and his passion to serve the community of the disabled from 1987-2001.

When Mitch reached 18 years of age in 1999 and became eligible for health care through Medicaid, Brian began thinking about opening a law firm which would be 100% devoted to the laws, regulations, and benefits that both frustrate and support clients with disabilities and their families.  Brian opened the doors of The Law Offices of Brian Rubin and Associates in 2001.  The firm provides more than just estate planning and special needs trusts.  Brian says, “Illinois has a very splintered benefit system.  There is no single door of entry, so families are constantly hitting roadblocks.  For example, our son Mitchell’s area of autism does not specifically fit in any one legally defined area.  He needs a variety of services, but no one agency supplies them as one package.  It’s my job as attorney and dad to discover how to get Mitchell the benefits that he needs.  We provide that same type of advocacy for our clients.”

He further explained, “We have found that the government does not tell people the whole story.  Our job as legal advocates is to tell the whole story and to help get appropriate services and residential environments.  We cannot do everything—but we act as the quarterback to get the financial advisor, psychiatrist, health care professionals, education providers, and caseworkers to collaborate to achieve the needed results.”

In closing, Brian shared this: “Mitchell has allowed me, Linda, “big sister/assistant mom” Nicole, and “little/big brother” Benjamin to better appreciate what’s truly important in life… and what is not so important.”

Brian Rubin has created a website (www.brianrubin.com) which is filled with helpful information.  In addition, he makes public presentations frequently throughout the Chicago metropolitan area and Illinois.

The Rubin Family: Benjamin, Mitch, and Brian in back; Nicole and Linda in front

He is 80 years old but looks like mid-60s.  When I told him that, he remarked, “Thanks, but the old noodle is giving out.  Doctor says I’ve got dementia.”  His wife nodded in vigorous affirmation.  She added, “He goes to the store with a list, but always messes it up.”  She was not trying to be hurtful—rather, she just wanted me to know how things really sit.  This time, he nodded in animated agreement.

They have been clients for years, and they had urgently called to “get their affairs in order.”  He has his brain scan results, and she has emphysema and COPD.  She has already signed a DNR for herself.

As I listened to the facts, she threw me a bombshell.  “I heard about the five-year Medicaid look-back rules, so I cashed in my IRA and gave $10,000 to each of our four adult children.”  I gulped and said, “That was a mistake.  Based on what you have told me about your health and your assets, it is highly likely that one of you will need nursing home care before 2015.  Your gifts to your children will create a six- to eight-month penalty period of ineligibility for Medicaid nursing home benefits.

She asked, “What should we do?”

I answered, “You should call your family members and tell them that you made a mistake and to please give you back the money.”

Her look told me that she would never do that.

Her husband said, “We screwed up, huh?  We should have called you first.”

Most elderly clients who give away money due to a medical crisis will need long-term care within a short period of time.  If you know a client or a client family member who is thinking about giving away assets “to protect them from being lost to nursing home expenses,” please tell them to call an elder law attorney first.  Our firm can be reached at 630-585-5200 or rick@lawelderlaw.com

How do you think you would feel if you could not remember a time that your father or mother did not have memory issues?  John Remaly was only nine years old when his dad was diagnosed with Young Onset Alzheimers.   He and his sister Alyssa have grown up adjusting to the gradual loss of their dad’s memory and ability to care for himself.

I spoke to John and his mom, Melinda, and asked them to share with me some of the trials and victories that they have experienced during the last few years.  John told me that in his family, they have worked together to provide a united front to withstand Alzheimers’ attack on their family happiness.  “Most people, when dealing with something like this, start to fight and blame each other.  We have decided to use our gift of humor to find creative ways to work with my dad.”  He went on to share with me that his father, Rick Remaly, has always been a guy who loves the quick one-liner jokes and over-the-top comedy.  He says that the family enjoys shows like Will and Grace, Everybody Loves Raymond, and Family Guy.  John and his sister Alyssa love theater and acting, and they have memorized sketches from the different shows, complete with script, dialogue, jokes, and timing.  This helps keep their father engaged and laughing.  John quickly added, “Dad can still catch ‘quick humor’ and he is very easily amused.  In fact, one evening when he was feeling low, I decided that he and I should have a little fun and put calcium tablets in our mouths.  Do you know what happens when you put calcium tablets in your mouth?  It doesn’t hurt you, but you foam like a rabid dog!  Dad and I could not stop laughing.”

Melinda added that life at home is not always humorous and that John has had to take on the role of being an adult and a caregiver for his father.  She admires the way John works with his father.  Rick seems to take direction better from John than anyone else.  “When you’re dealing with Alzheimers, you need to work together as a family and be open to sharing with loved ones and co-workers.  You need to be truthful in keeping people informed about the real situation at home.”  She went on to say that it’s very important to be able to go out with friends and to have support systems.  In fact, one of the key principles in helping the Remalys stay emotionally healthy is recognizing that from time to time, you have to get away from the caregiving at home.

The Remaly family is about to embark on a new phase of life.  John Remaly has applied to, and been accepted at, Bradley University in Peoria, Illinois.  His dad and mom will be losing one of the pillars that support being able to provide for Rick at home.  John wrote a college admissions essay in October 2009 which detailed his experiences in growing up with Alzheimers.  The entire text is available by clicking on this link: John Remaly’s College Admissions Essay

In both October 2008 and October 2009, Melinda Remaly organized a group to participate in the Alzheimers walk in Libertyville, Illinois called “On the Move for Alzheimers.”  Each year the family, friends, and John’s friends from school walked together to raise funds for Alzheimers research.  All the friends and family members wore t-shirts that said. “Walk for Rick.”  On the back of Mr. Remaly’s  t-shirt it said, “I am Rick.”

We here at Law ElderLaw are grateful that the Remaly family has chosen us to be their legal advocates.

Nunca te Detengas  (Never Stop Yourself)
The Words of Mother Teresa of Calcutta

In February, when I was in Central America, I was given a brochure which celebrated Costa Rican retirees and their value to their country.  I translated the inspiring Spanish language message, which quoted the words of Mother Teresa of Calcutta.  I have never seen any comparable message sent to retirees here in the United States, so I want to honor my fellow senior citizens with this message. Yes, I too qualify for the senior discount coffee at McDonald’s without asking for it!  In addition, I have noticed that my lovely and still youthful-looking wife Rose requests the senior discount at the movie theater.  (Shhhh—please don’t tell her I told that I told you!)

The brochure said this:

Our retirees are an important reason that our country is a wonderful place to live.  We celebrate all senior citizens and older adults.  Thank you for constructing a better country.  Please read these words of encouragement by Mother Theresa:

Never Stop Yourself

Always keep in mind that your skin will wrinkle and that your hair will go white and that your days will become years…  But the most important thing never changes—your  strength of will and your convictions don’t have an age limit.  Your spirit is like a feather duster to wipe away the cobwebs.

After every arrival there is a leaving.  After every accomplishment there is another challenge.  While you are alive, feel and know that you are alive.

When you are feeling sorry for yourself about what you used to be able to do, do something new.  Don’t live surrounded by the yellowed photos of yesterday.  Continue forward, even though you feel abandoned by others.  Don’t let rust take away the steel that is in you.

Behave in a way that others respect you, not pity you.

When, due to your years, you cannot run—trot.  When you can no longer trot—walk.  When you can no longer walk—grab a cane and keep on going.

Never stop yourself.

She said it all.

My 4 year-old granddaughter, Lucy, has been explaining my recent illness by flatly stating, “Grandpa’s got a bug in his lungs.”  Thankfully after an almost two-week illness, I am ready to head back to the office… for half a day. (After all, “In Sickness and in Health” is the official name of my weekly blog, even though its host website is http://ricksblog.lawelderlaw.com.)  During my bout with sinusitis—which morphed into bronchitis—I experienced several things worth sharing.

First, when we are healthy, we do take a lot for granted.  I am grateful to be able to sleep in a bed again after many nights of trying to sleep in a chair.

Second, being a lawyer is not very helpful when you need medical care.  One physician who did a follow-up checkup told me that the prior doctor warned her that “he is a lawyer.”  I was not exactly sure how I should feel about that, but  it was obvious that we lawyers cause medical personnel to act as though they are treating a sick cobra. Third, I enjoyed using Wikipedia to look up everything I could about my illnesses and medications.  As a predominantly left-brained analytical, it is very satisfying to come home from a doctor’s office or the urgent care and look up information.  It was very helpful to understand the diagnosis of bronchitis.  I actually understood my own anatomy better and could better apply what the doctor had told me to do and what to expect.  In addition, I had been admonished to NOT use a cough suppressant  medications.  “But why?” I wondered.  “I feel like I really need some cough medicine!”  To better understand that order, I looked up cough suppressant medicines and learned that with bronchitis, its better to “promote coughing.”  Cough suppressants actually make it more difficult to clear the bronchial tubes.

It really helped to check all of the information out via Wikipedia ( www.wikipedia.org) and WebMD (www.webmd.com).  I could better understand why I got a little crazy after spraying Albuterol into my  body.  Nonetheless, that medication is a life-saver for asthmatics and folks afflicted with acute bronchitis.  For more on that, see the article entitled “Ventolin remains a breath of fresh air for asthmatics after 40 years.”

I am extremely grateful to my wife, Rose, and the entire legal team at Law ElderLaw.  We recently celebrated our 5th anniversary as an elder law-focused practice.  When I decided to dedicate myself to the frail elderly and the disabled, one of my biggest concerns was my own age.  One of my chief goals has been to make sure that if and when something happens to me, in that I cannot serve as the leader, the Law ElderLaw team would be strong enough to carry on.  Based on recent experience, I can assure everyone that Law ElderLaw is being ably managed and staffed by my successors.  Nonetheless, it’s time for me to get back to work!

(This post about our amazing veterans and Law ElderLaw’s dedication to helping them receive the benefits they deserve was first published in October of 2008. I am reposting this today in the hopes that it will help more veterans and their families find the aid they need.)

“Most of the men who hit the beach with me that day now lie under little white crosses. Some news guy wrote that if you landed on Iwo Jima in the first wave and you were not hit by machine gun fire, that it was as unlikely as running through a thunderstorm and not getting wet. There was nowhere to hide on that rock. It was like fighting on the moon. No trees, nowhere to find cover. There were so many of us that every time the Japanese fired, somebody got hit. During the first three days that I was on the island, I got a bullet-hole through my shirt, my helmet, and my pants.”

These are the words of my client Fred as he described to me the experience of going up against the Japanese forces who manned the island of Iwo Jima on February 19, 1945. Many of my veteran clients have amazing stories to tell from their days in the service.

As an attorney who is focused on the issues of the elderly, an important part of my practice is to assist wartime veterans who are now over 65 and disabled. We often assist them (pro bono) by securing a veteran benefit to help pay for care for themselves and/or their disabled spouses. I am honored to have the opportunity to serve those who have served their country so well.

Fred was in my office that day to discuss how he was going to pay the over $8000 a month cost of care for his wife, who suffered her first debilitating stroke eighteen years ago and has needed care ever since.

Fortunately for Fred, a wartime veteran does have the possibility of receiving some assistance through a VA Special Monthly Pension. It’s important to understand that Aid and Attendance or the Survivor Spouse VA benefit is only available to those who meet very stringent limitations related to medical necessity for care, and financial need as determined by both income and asset limitations. It is my job as an attorney to be able to assist individuals to evaluate what, if any, VA Aid and Attendance benefits may be available to them. This VA benefit can make all the difference in helping a wartime veteran or widowed spouse maintain their dignity, home, and lifestyle.

For more information click here to download any of our .pdf guides about VA Benefits.

Our Law ElderLaw motto is “Serving Seniors and Those Who Love Them.”  Jo Buscemi, niece of Raffaella Calabrese (more affectionately known as “Auntie Florence”), shared these words with me and asked me to share them with you:

Auntie Florence

Dear Mr. Law,

Around October 2008 my mother and I had our first meeting with Mr. Jonathan Johnson in regards to my Aunt Raffaella Calabrese (“Auntie Florence”).  My aunt had suffered for years with dementia and had various (six in all) live-in caregivers.  I was told by many to keep my aunt in familiar surroundings for as long as possible and I being her power of attorney, I did exactly that.

I came to your Aurora office one day and had our initial meeting with Jonathan.  I was very apprehensive.  Norridge HealthCare Facility recommended that I talk with you folks.  Well, after our second meeting with Jonathan and many phone calls and questions, we returned in about November of 2008 and contracted with your firm for assistance.  I put off as long as I possibly could placing Auntie in a nursing home, and then only because our sixth caregiver was returning to Poland and Auntie had exhausted all her life’s savings in addition to what I paid for from my savings.  I have MS (Multiple Sclerosis) and it was difficult to care for my aunt and mom, so I had to quit my job two years ago.  But this letter is not about me—it is about my Auntie Florence.

Auntie went to live at Norridge HealthCare Facility on June 18, 2009 and sadly, she passed away on February 9, 2010.  We were very satisfied with this facility and its staff.  During this time I was assigned to Gina Salamone as our attorney at Law ElderLaw.  I know I drove Gina and Sean (and everyone who answered the phone) nuts with all my calls and my frantic questions and nervousness.  I do believe Gina and I have a bond, though, and I trusted her with my precious family member and for that I am very grateful to her.

Jonathan Johnson and Gina Salamone

I have recommended people to your firm and I have even gone as far as handing out Jonathan’s and Gina’s phone numbers—and advised these people to get all their ducks in a row now rather than wait.

I have attached a picture of Auntie Florence and I wish you to express my family’s sincere appreciation for all the thousand times I called, ranted, cried, and went nuts—but your staff never gave up, not once.  Gina even went to the DHS regional manager on our behalf.

Mr. Law, I really appreciate everything your entire staff did for Auntie, and I promise you I will always recommend people who need this type of help to your firm.  God bless everyone at Law ElderLaw in Aurora, Illinois.  Thank you all again on behalf of Auntie Florence and the Buscemi family—we truly thank you.   Please enjoy the catered lunch on Thursday that my family is having delivered to your office.

Jo Buscemi

Enjoying the meal