Letter From Home: The Journey 7/7/11

Our friend took a ride in a vehicle today.  That may not seem like news of any kind.  It was likely to be his last ride ‘out and about’; this is the aching truth about his situation due to advanced Alzheimer’s.  After this trip there will be less of an outside world to participate in, and instead more personalized care in a new home to match his growing medical needs.

This man’s agony over the past years has made me wonder how this all fits into the bigger puzzle that we call life.  This type of question has abounded since the start of time, and the answers are as elusive as they ever have been, does not stop me from pondering “why”, and for what purpose does all this happen.

I pondered this last ride all day and no matter how I approached the matter mentally the same medical realities bit back.  Alzheimer’s has robbed our friend of so many abilities that moving him about, as well as every other aspect of living, requires skilled nursing care.  There is no more carefree banter, or spontaneous laughter.  The big stage light of a  life is being narrowed bit by bit to a small glow.  The man who has a PhD can no longer write his own name.

Shortly after breakfast our friend journeyed from the Veterans Hospital to his new home at Badger Prairie Health Care Center.  I have driven that several times over the past days as James and I prepared for the move.  The city traffic and combustion gives way slightly to the country setting as Madison is left behind.   But just as soon I felt that the country scenes could be enjoyed the ramp comes into view that takes off to Badger Prairie.  There is not much time to enjoy the trees and flowers.  But then our friend has not been really enjoying them for some time.

On Wednesday, James and I were in court to secure guardianship of our friend be officially granted.  It was not the first time that James and I felt the weight of the responsibility for our friend, after all we have done everything financially and legal as his representatives for years.  If we had to do it all over again, we would sign up as it remains the right thing to do.

Yet I could not deny the feelings inside that told me his child, who lives only a few miles away, never once in the last few years made contact with him, or attempted to carry any of the responsibilities.  For whatever reason she dropped her father, and now even if she wanted to rekindle a relationship it is too late.  The father she knew is gone to a disease that is the most wretched way to exist I can think of.

There have been times that James and I have shed some tears over being the ones that had to literally see his authority to make decisions erode as the powers that he signed over to us years ago forced our hands to insure his safety and well-being.  While what he have done meets the praise of the court, social service agencies, Alzheimer’s Association, and all the medical teams we have interacted with, there is no way to describe the taking away of ones’ right to vote.

I must admit there was some humor in the court room when it was stated (again) that our friend was not to be allowed to have a gun.  (Readers of my blog might  grin over the back and forth of that topic with our legal counsel.)

The journey that this disease has forced our friend to take is also one that has altered our lives and sharpened our focus on how to fight for what is right.

From having his apartment fitted for safe-living years ago, to finding alternate housing as the disease progressed, to fighting for better food and more activities in that facility, to then seeking more professional care as events warranted, there was always ‘something’ out there to deal with.

From sitting in a number of meetings that lasted up to two hours or more just to have contractual agreements fulfilled, to fighting for fresh vegetables and more fruit at meal time, to making sure medications made it to the pharmacy to be bubble-wrapped, we worked to make sure no issues were dropped or ignored.  We became pains in the butt to some, and friends to others we never knew the last name of.

When things did not go according to how we knew they should for the safety and happiness of our friend we went to the state agencies that govern the facilities.  We are not afraid of making a scene to insure the right thing is done, especially when word was given years back to do the very best when things got tough.

There are too many people needing these memory care facilities, and too few rules and regulations governing them.   No one should have to see signs like this one (below) on the walls of a facility.  This one was posted after  we raised an alarm about what happened to the many wet wipes and wash clothes we bought.  At the end of the day I worry about all those who do not have advocates to fight for them.  (Who throws away wash clothes?  That is another post….)

Our friend’s increased needs started to arise at the same time my mom passed away, and my dad’s health problems started to increase.  Not being able to effect positive change for my dad’s health for many reasons, I decided to make a difference in another way.  James and I never looked back after we started the journey with our friend and his fight with Alzheimer’s.

That there are so many others on a similar journey is so sad.

The day we moved our friend away from the old facility I stopped into the room of an elderly lady (89) to alert her to the move.  Too often faces just ‘disappear’ from these homes leaving some to wonder what happened.  I did not want this lady to think death had claimed her friend.

After informing her of the move she expressed that his needs would be more tended to in another place and then asked “What about us?”

It hit me hard, and I really did not know how to respond.  While we had advocated for our friend, all the residents were benefiting.  When we forced the facility to follow the rules, all who lived there gained.

There is no way to save the world.  Though I wish I could .

In the end, all I could offer her was one of our friend’s large bookcases for her many volumes that she still enjoys.  James and I moved it to her room, loaded it as she directed with books, and closed the door as we left.

The journey that this disease forces too many to take is most dreadful.  As the toll takes more and more away from a person the journey becomes even more solitary as the outer world loses meaning.  At some point even a last trip in a vehicle is lost to the ravages of an illness that defies a remedy.

Dane County’s Badger Prairie Health Care Center Is Like Nursing Home On Steroids

Difficult decisions to make need not be dreadful ones thanks to Dane County’s Badger Prairie Health Care Center.

If you are like me then you have a certain image in your mind of what a nursing home looks and smells like.  To be honest, far too often that image is still an accurate one, especially in small rural areas.

But in Dane County there is a bright and noteworthy exception to the ingrained images of nursing homes that deserves praise and mention.  Thanks to the commitment of taxpayers to put our money where our mouths are this area has nothing short of a nursing home on steroids.

That is a most remarkable achievement that makes it easier for all involved when making tough decisions.

Badger Prairie Health Care Center is a brand new facility that cost over $22 million and opened earlier this year.  It made me think of the grand Hospice Care building in Fitchburg.  Each facility has been able to transform and soften the rougher edges off tough decisions with the use of design and character of a building.  As such, though it seems impossible to be impressed with a nursing home, after touring Badger Prairie that is exactly how I felt.

Best of all I was made more easy with the decision that had to be made due to the place being staffed with some very commendable people.

James and I have sought out the best care available over the past number of years for a friend who suffers from Alzheimer’s.  As this most frustrating, unforgivable, and damning disease continues to take control of our friend more advanced skilled nursing services are required.

Last week after having visited a number of community-based residential facilities in Madison and the surrounding area I made a phone call to Badger Prairie.  It was late in the day, and the places we had already looked at were coming up short in terms of where we would feel comfortable in placing our friend.

So shortly before 4 P.M. I called the Director of Social Services at Badger Prairie and asked if there was any way to see the facility that evening.  I would accommodate in any way if we could take a tour.

I explained a bit of the back story which involved seeking guardianship of our friend in court this week, his being placed at the VA hospital while we sought a safe home for him, and the clock that was ticking.

With compassion and professionalism I was informed that she did not have kids at home that evening and a tour could be arranged.  Later she commented that the care we showed for our friend was obvious, as was the stress level of making a good decision over his future.  James and I have taken on this task as volunteers and are committed to following through as best we can.

From that point forward things moved quickly.

Clean and fresh surroundings greeted us, along with all the services one would need from barbers to dentistry all under one roof.

I was also very impressed with the ‘green’ technology that has been used to not only help the planet, but also be economical for Dane County taxpayers.

A solar hot water heater warms water used for laundry, showers, and baths.  More than 100 geo-thermal wells were drilled at the site to pull up water from the earth to help heat and cool the site.  These wells are all 300 feet deep and will reduce the need to run costly air conditioners and heaters by helping control the inside temperature.

As always I somehow latch onto odd facts, and this experience was no different.  Most will know that Badger Prairie is one of the oldest, continually operating health care facilities in Wisconsin.  That is very impressive.

Which leads me to my historical trivia angle to this story.  During the Civil War this center helped Civil War widows and their children with their  health care needs.

In a few hours this will be home for our friend.

We think a wise and medically prudent decision was made.

A sincere thanks to those at Badger Prairie who made a tough decision not be a dreadful one.

Glen Campbell Has Alzheimer’s Disease

This is so sad.

I recall as a little kid sitting on the ground with my family in Wisconsin Rapids watching a young, slim all-American Glen Campbell play his guitar and sing during an outdoor concert.  Campbell’s image changed over the decades, and not always for the better.  Still this news today is the most dreadful.

Country music and pop legend Glen Campbell is staging a poignant farewell tour that lets him say goodbye to fans as he faces his toughest battle, Alzheimer’s disease.

The 75-year-old singer, musician and occasional actor saw his star rise in the 1960s and 1970s where is smooth country-style endeared him to millions of fans. Now, with a career that has spanned 50 years, the man will have the chance, unlike so many others, to say goodbye.

The Goodbye Tour, as it is being called, it set to follow the release of his final album, The Ghost on the Canvas which is due out August 30. The dates and locations have yet to be determined.

Sargent Shriver Dies At 95, His Activism Made A Difference

One of the good guys who understood the good that can come from government and what being involved in the political process can achieve has died.

R. Sargent Shriver, who was responsible for launching the U.S. Peace Corps after marrying into the Kennedy family and joining John F. Kennedy’s White House, has died, a family source told CNN.

Shriver, whose full name was Robert Sargent Shriver, was 95. He had suffered for years from Alzheimer’s disease.

For more on Shriver’s amazing life click here.

 

Sargent Shriver In Critical Condition

Another memory from Camelot.

Former Peace Corps director and vice-presidential nominee R. Sargent Shriver was in critical condition Monday at a hospital in Maryland, a spokeswoman for the family said.

The 95-year-old was admitted at Suburban Hospital in Bethesda early in the day, the family said in an e-mail statement attributed to spokeswoman Kirsten Seckler.

No other details about his ailment were released and no more information about his condition was available late Monday. Shriver announced in 2003 that he had Alzheimer’s disease.

He served as the first Peace Corps director in the administration of his brother-in-law, President John F. Kennedy. He also was Democrat George McGovern’s running mate in 1972.

Shriver’s wife and Special Olympics Founder Eunice Kennedy Shriver died in 2009 at age 88.

He is also the father of former NBC reporter Maria Shriver, who is married to former California Gov. Arnold Schwarzenegger.

The handsome Shriver is often known first as an in-law. But his achievements are historic in their own right and changed millions of lives: the Peace Corps’ first director and the leader of President Lyndon Johnson’s “War on Poverty,” out of which came such programs as Head Start and Legal Services.

Within the family, he was sometimes relied upon for the hardest tasks. When Jacqueline Kennedy needed the funeral arranged for her assassinated husband, she asked Shriver.

Shriver had fought for integration in Chicago and helped persuade Kennedy to make a crucial decision in the 1960 campaign despite other staffers’ fears of a white backlash: When the Rev. Martin Luther King Jr. was jailed in Georgia that fall, Kennedy phoned King’s wife and offered support. His gesture was deeply appreciated by King’s family and brought the candidate crucial support.

Soon after taking office, President Kennedy named Shriver to fulfill a campaign promise to start the Peace Corps. Although it was belittled by some as a “kiddie corps,” Shriver quickly built the agency into an international institution.

Long Suspected: President Reagan Had Symptoms Of Alzheimer’s In Oval Office

It is truly sad when anyone is struck with Alzheimer’s.   There is no one that would not have snapped their fingers if they could have had Ronald Reagan not suffer this affliction.  I know I would have.

Having said that the news this week will make many historians ponder new assessments of the Gipper’s years in office.

Ron Reagan, son of former President Reagan, reported this week in a new book the aging President did have symptoms Of Alzheimer’s while serving in the Oval Office.  It is not surprising to hear, but it is unsettling when one considers the possible ramifications of such a disease impacting the decision making capabilities of the leader of the free world.

But youngest son Ron Reagan is spoiling the good cheer with a new book that suggests the Gipper suffered from Alzheimer’s disease while in the White House, a claim dismissed by Reagan’s doctors and outside experts. “Had the diagnosis been made in, say, 1987, would he have stepped down?” Ron asks, regarding the disease confirmed in 1994. “I believe he would have,” he writes in My Father At 100: A Memoir, due in bookstores Tuesday. [Poll: Who do you think was the worst president?]

In addition to challenging the former president’s doctors, Ron also reports for the first time that Reagan, right after falling off a horse six months out of the White House, underwent brain surgery, denied by Reagan associates.

Let’s start with the Alzheimer’s diagnosis. It was announced in 1994. While it prompted some to suggest they knew Reagan had the disease as president, his four White House doctors said they saw no evidence of it. But Ron, who became a liberal and atheist, disappointing his dad, suggests he saw hints of confusion and “an out-of-touch president” during the 1984 campaign and again in 1986, when his father couldn’t recall the names of California canyons he was flying over. Arguing his case in the book, Ron adds that doctors today know that the disease can be in evidence before being recognized. “The question, then, of whether my father suffered from the beginning stages of Alzheimer’s while in office more or less answers itself,” he writes. [See a gallery of caricatures of Reagan and other pols.]

Besides playing amateur doctor, Ron Reagan reveals, if true, brain surgery on his dad never before reported. He accurately reports that Reagan, after leaving the presidency, was bucked from a horse on July 4, 1989, while in Mexico. Ron tells of how his dad, after initially refusing medical help, was transported to a San Diego hospital. “Surgeons opening his skull to relieve pressure on the brain emerged from the operating room with the news that they had detected what they took to be probable signs of Alzheimer’s disease.” Several Reagan associates, however, say there was no surgery in San Diego.

What’s more there is no reporting about any San Diego operation on Reagan. News reports at the time of his fall say Reagan was flown to a hospital in Arizona, where he was treated for scrapes and bruises and released after five hours.

There were no reports of Reagan with a shaved head or skull stitches later that month when he served as a guest TV announcer at the July 11 baseball All-Star Game in Anaheim, Calif., or when he was inducted into the Cowboy Hall of Fame in Oklahoma City on July 21.

In September, he went to the Mayo Clinic, where a small burr hole was drilled to relieve a fluid buildup due to the fall.

Ron Reagan doesn’t mention this, but says that Reagan visited the Mayo Clinic in 1990 for tests that “confirmed the initial suspicion of Alzheimer’s.” Reagan’s post-presidency history, documented in several archives like University of Texas, reveal no such visit. And Dr. John E. Hutton Jr. his doctor from 1984 through Reagan’s retirement, told the New York Times that Reagan didn’t show the tell-tale symptoms until 1993.

Ron Reagan won’t talk about his book until its release, says his publisher Viking. The publisher also didn’t provide documents backing up the San Diego operation claim.

Here are key excerpts from Ron Reagan about his dad’s situation from My Father At 100, A Memoir.

Early hints that Ronald Reagan’s mind was fuzzy:

“Three years into his first term as president, though, I was feeling the first shivers of concern that something beyond mellowing was affecting my father. We had always argued over this issue or that, rarely with anything approaching belligerence, but vigorously all the same. He generally had the advantage of practiced talking points backed up by staff research, but I was an unabashed, occasionally effective advocate for my own positions. ‘He told me you make him feel stupid,’ my mother once shared, to my alarm. I didn’t want my father to feel stupid. If he was going to shoulder massive responsibility, I wanted him to feel on top of his game. If he was going to fulfill his duties as president, he would have to be.” Pages 204-205

“Watching the first of his two debates with 1984 Democratic presidential nominee Walter Mondale, I began to experience the nausea of a bad dream coming true. At 73, Ronald Reagan would be the oldest president ever reelected. Some voters were beginning to imagine grandpa—who can never find his reading glasses—in charge of a bristling nuclear arsenal, and it was making them nervous. Worse, my father now seemed to be giving them legitimate reason for concern. My heart sank as he floundered his way through his responses, fumbling with his notes, uncharacteristically lost for words. He looked tired and bewildered.” Page 205.

“My father might himself have suspected that all was not as it should be. As far back as August 1986 he had been alarmed to discover, while flying over the familiar canyons north of Los Angeles, that he could no longer summon their names.” Page 218.

The July 4, 1989 horse bucking and discovery of Alzheimer’s:

“In July 1989, barely six months out of office, my father visited friends in Mexico. While out riding he was thrown when his horse shied at something in the trailside scrub. That my father, even at age 78, would be bucked off his mount was, in itself, an ominous sign. It’s a wonder he didn’t break any bones, but he did hit his head hard enough to cause a sizable contusion. After initially refusing medical attention, he ultimately relented and was transported to a hospital in San Diego. Surgeons opening his skull to relieve pressure on the brain emerged from the operating room with the news that they had detected what they took to be probable signs of Alzheimer’s disease. No formal diagnosis was given, as far as I know. I have since learned from a doctor who happened to be interning at the hospital when my father was brought in that surgeons involved in his care, in what my informant characterized as ‘shameful’ behavior, violated my father’s right to medical privacy by subsequently gossiping about his condition.” Page 217.

“Doctors recommended to my mother that further tests of cognition be conducted the following year to measure any decline. Those tests, at the Mayo Clinic, confirmed the initial suspicion of Alzheimer’s.” Page 217.

“I’ve seen no evidence that my father (or anyone else) was aware of his medical condition while he was in office. Had the diagnosis been made in, say 1987, would he have stepped down? I believe he would have. Far less was known about the disease then, of course, than is known now. Today we are aware that the physiological and neurological changes associated with Alzheimer’s can be in evidence years, even decades, before identifiable symptoms arise. The question, then, of whether my father suffered from the beginning stages of Alzheimer’s while in office more or less answers itself.” Pages 217-218.

 

Saturday Song: Brett Eldredge “She Calls Me Raymond”

Alzheimer’s and county music blend here today.  But first I want to acknowledge a wonderful event for a singer and song writer. 

Last weekend Brett Eldredge stepped onto the Grand Ole Opry stage for the first time to sing.  I want to recognize that moment, and the comments that Eldredge made.  What he had to say was what I hope all would feel if given the chance to stand in the famed circle.

Not only was the young artist introduced by his mentor, the legendary Bill Anderson, but his performance was witnessed first-hand by a large crowd from his hometown of Paris, Illinois which included Brett’s grandparents Shirley and Spizz Eldredge, who traveled to Nashville, Tenn. to see their friend, relative and hometown boy’s dream come true.

“I remember standing by the stage and thinking about all those people who have stepped in that (wooden) circle before me … Hank Williams, Johnny Cash … all the people that are part of the Opry history, the legends, the people who have made music what it is today,” Eldredge said following his debut. “I was nervous but it was kind of a cool nervous. It was almost like an energy. I remember looking out in the crowd and feeling like I was having an out-of-body experience like it wasn’t really happening.”

One of the songs that Brett Eldredge is known for is one that deals with a most dreadful disease.  Alzheimer’s afflicts an ever-growing number of people, and more research is needed to find the answer at slowing it down. Hopefully someday ending it.

The young man was excited that his grandparents were going to be in the audience to see his debut.

“It will be great that my grandpa is going to be here,” Brett said with a big smile. “I kept bugging my agent about when am I going to get to do the Opry and when he told me I was invited to perform the first thing I did was call my grandpa.”

Brett’s grandma suffers from Alzeheimer’s and he was afraid his grandparents might not be able to make the trip due to complications with the disease.

“The disease makes me so angry,” he stressed. “I think one of the ways I wrote the song (Raymond) was out of anger. I was so frustrated and it helped me through this time.”

The song that Eldredge wrote called “She Calls Me Raymond” was the second song that he performed at the Mother Church of Country Music.   I use a radio studio singing for the video today.