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.

Most of us have seen angels represented as either winged cherubs or gracefully-robed harp players.  Just before last Christmas, I met a real harp-playing angel named Barbara Fackler.  I was introduced to Barbara because she had been employed by Passages Hospice to provide music for a resident at Aurora Rehabilitation Center.  Frankly, I had never heard of music therapy, so I was eager to understand what Barbara does and how she helps the healing process.

Barbara became involved with therapeutic music accidentally.  She has loved playing the harp since she was a child—she says there was no other instrument that she wanted to play.  Her idea of the perfect harp is a pedal harp, which is a large, heavy, awkward-to-move instrument.  She smiled when she told me that her husband, Dan Fackler, always jokes that she married him only because he was the most careful guy that she had “auditioned” as a harp-transporting boyfriend.

A number of years ago, Barbara decided she needed to acquire a harp small enough to take when visiting relatives out of town.  The first trip the little harp made was to visit her grandfather, whose Alzheimer’s had progressed to the point that he rarely spoke.  However, after Barbara played her harp for him, he went from silence to speaking in short sentences.  Additionally, he became responsive in his interactions with other family members.  It was a stunning discovery.  “There is something magical about acoustic sound.  Scientific research has repeatedly suggested that acoustic music has a more profound effect than recorded music,” Barbara relates.

In addition to her work with hospice patients, Barbara uses her harp as a way to share her gift of music with friends and loved ones who are ill.  She takes her harp with her to the hospital sick room.  “Having a conversation with someone in the hospital can be very exhausting to the patient.  So, I decided to just show up with my harp and play beautiful music.  It is great to just go, play, and provide a human connection that does not require any expectations of an interactive response.”

Barbara has earned respect for her uncanny ability to connect with many seniors and others who suffer from chronic progressive diseases.  One of her clients at Aurora Rehabilitation Center has primary progressive aphasia.  “Aphasia” means the inability to create words or speak.  This particular client cannot recover and often appears confused and unintelligible.  However, following a music session in which Barbara plays the harp for an hour, the client often appears much more capable and articulate for the next few days.

One of Barbara’s current endeavors is teaching the harp to senior citizen students.  She told me that learning to play a new instrument is one of the best ways to create mental stimulation.  She says, “Musicians work between the left and right hemispheres of their brains faster than other people.  In addition, it’s great therapy after a stroke.  If you teach the dominant side of the body to do something, then the less-dominant side can learn to mimic.”  She has seen how learning to play the harp after a stroke allows people to regain more functionality than other types of therapy.

Barbara has just completed a new CD entitled Pleasantries & Diversions.  You can click on this link: www.hornandharp.com to find out how to purchase that CD.  I highly recommend that you consider visiting her website www.harpinstead.com or phoning her at 630-665-6098 to purchase her music and/or engage her services as a harpist.

My wife, Rose, picked me up from the office the other day.  As usual she asked me, “What did you do today?”  I replied, “Well, honey, let me tell you about the most important moment of my day…

“This afternoon I sat next to a gentleman in his mid 80s who has a diagnosis of Parkinson’s disease.  He was in my office with his wife of many years and a caring adult daughter.  I told him that we  needed to discuss one of the most difficult questions that I have to ask my clients—we needed to talk about feeding tubes, hydration/water, ventilators, and other life-prolonging treatment.

“These things are all the more difficult to deal with when you are looking at a man who has a high probability of being alive, incapable, and subject to the life-and-death decision making of his loved ones.  I took a breath and then looked into his eyes.  He met my gaze, and then I placed my hand over his hand and said, ‘Your family needs to hear from you how you feel about life-prolonging treatment.  I understand that you have been diagnosed with Parkinson’s disease.  One of the things that may happen with Parkinson’s is that you may get to the point where you won’t be able to make your own life-and-death decisions.  You may not actually die from Parkinson’s disease—but you have a high probability of dying from a complication of Parkinson’s.  You may get the point where the doctor comes to your family and says that you are unable to make a decision about life support, and they must decide whether or not you should have a feeding tube or hydration or a ventilator.  What do you want your family to do?  Do you want these things?’

“He looked at me, and then he looked at them.  He answered firmly, ‘I do not want that!  Just keep me comfortable.’

“I turned to his wife and his daughter and I asked them if they understood his wishes and if they would be able to make sure that his wishes were respected when other family members show up and insist that ‘we have to do everything we can for Dad!’  They were given a chance to talk, and after that the daughter said, ‘Dad, I am so grateful that I know what you want.  It gives me such peace of mind to be sure about what you would want us to do.’”

Helping clients and their families have peace of mind is one of the most important things that I can do as an elder law estate planning attorney.

What about you?  Dear Reader, does your family have the piece of mind of knowing whether or not you want a feeding tube in the event that you are unable to speak for yourself and have no reasonable chance of recovery?  Please take action over the holidays to have this important conversation with your loved ones.  Then… put it in writing!

A substance known as Agent Orange (AO) is still killing Vietnam veterans after all these years.  If you know and love a Vietnam War veteran, this post has important information that should be forwarded to everyone who “had boots on the ground” in Vietnam during the Vietnam War.

In June I was speaking in Atlanta at the “Advanced VA Benefits Course.”  Because of my concentration in the area of elder law, I was able to unveil some of the secrets about a special VA benefit to pay long term care expenses.  Benefits may be available for the over-65 wartime veteran and/or spouse of a veteran who is burdened with long term care costs due to Alzheimer’s, Parkinson’s, or other age-related long term disabilities.  This benefit helps pay for home care, assisted living facility care, and nursing home care.

After my speech, I eagerly awaited the next presenter, Karen McIntyre, a nationally known VA-accredited agent.  Her topic was “Presumptive Diseases Linked to Agent Orange Exposure.”  For me, that is one hot topic.  Within the last twelve months I have served two Vietnam vet clients who have died of cancers which they felt were caused by their wartime service.  Unfortunately for them and their surviving spouses, the Veterans Administration had rejected the benefit claims that they had submitted through a Veterans Service Organization (VSO).

Agent Orange was an herbicide which was liberally sprayed all over Vietnam to defoliate the tropical forest.  It was believed that defoliation was necessary so that enemy troops infiltrating from North Vietnam would be more visible from the air.  Unfortunately for our servicemen, servicewomen, and the civilian Vietnamese population, our government chose to buy the “cheap stuff” which was filled with dioxins.

I asked Wayne Tomlinson, an expert in agrichemicals, to explain Agent Orange to me.  He responded, “Actually, Agent Orange is very similar to some commonly used agricultural herbicides and  brush killers known as 2,4,D and 2,4,5,T.  In its proper form it is harmless to humans. I have been totally immersed in both 2,4,D and 2,4,5,T and it has never caused me any harm.  These chemicals been used extensively within the United States on roadsides, pastures, and parks.  Within the United States the dioxins have been removed from the final product. Unfortunately, I guess that when some government purchasing agent asked for the lowest price bid for this substance to be delivered as a weapon of war, they did not specify that it needed to be dioxin-free.”

Due to the presence of dioxins and the passage of almost 40 years, there are now many diseases that have now been conclusively linked to AO exposure.  When contracted by a Vietnam War veteran, they are now presumed to have been caused by AO.  A Vietnam vet must prove that he or she “had boots on the ground” in Vietnam to receive these medical and monetary benefits.  The benefits can be of assistance to both the veteran and the surviving spouse.  The list of diseases is scattered throughout the official government documents and the VA regulations.  I have consolidated a list of diseases which are presumed to have been caused by Agent Orange exposure.  Click here to find this information: vietnam-vet-conditions-list

If you need to find an attorney to assist a veteran please click here.  In addition, Veterans Service Organizations are available to assist you.

P.S.  Many of our Marines and Special Forces units did have “boots on the ground” in Vietnam, but their service record shows they were stationed outside of Vietnam on ships or in other countries.  The veteran can prove his or her presence in Vietnam by supplying an affidavit from a fellow service person.  This is called a “Buddy Statement.”

Her voice, once upbeat and positive, was filled with anguish and despair as she said, “I just had another nerve block treatment to try to stop this never-ending, excruciating pain—and I’m still in torment.  In the blink of an eye, this disease totally changed my life.  I feel like life as I knew it is over.  I just want the old me back!”  One of my friends is suffering from long term nerve pain, which is one of the most common complications caused by Shingles. 

Although Shingles can occur at any age, seniors and baby boomers are the primary groups seriously affected by it.  Very recently, I have encountered this disease among my friends.  Quite frankly, I’ve never really known anything about this disease.  Nonetheless, I’m now convinced everyone over the age 60 should rush to get a Shingles vaccine. 

Shingles is a little known and underestimated foe. It is not a “pretty” disease and you definitely want to avoid it.   

Almost every adult is a “shingles carrier.”  If you had Chicken Pox, then you are carrying the Shingles-producing virus.  It’s probably dormant right now, lurking near your nerve cells.  Over 90% of the North American population has had Chicken Pox, so you stand a fair chance of developing Shingles at some time during your aging process, or any time your immune system is compromised by sickness, stress, or medications. 

You don’t catch Shingles; rather, your long-dormant Herpes Zoster virus wakes up angry and attacks you without warning.  Painful, ugly skin rashes erupt on the face and/or other parts of the body.  Unfortunately, these itchy, burning, blistering rashes hang around for about a month on the average.  If you do develop such symptoms, run—don’t walk—to get treatment right away.  There are helpful medications  which  are designed to lessen the extent and severity of the disease. 

After researching the disease for this blog, I highly recommend the $150 vaccine, which can cut the risk of long term nerve damage by 67%.  Anyone over 60 has a 50% probability of getting hit by this stealthy enemy.  Why risk scarring, skin infection, loss of vision or hearing, facial paralysis, and long term nerve pain (known as Post Herpetic Neuralgia or PHN)?  The Center for Disease Control (CDC) has recommended that all adults over 60 get an injection of the Zostavax  vaccine.  Even though I am just 59, I have called my primary care physician to arrange to get this vaccine.   The vaccine is safe.  It has been proven effective in preventing horrible nerve damage for 2 out of every 3 older adults who receive it. 

I just spoke with my friend again.  She is still suffering.  She asked me to beg, not urge, you to call today to get the Shingles vaccine.