The Long Goodbye, Doty Land Alzheimer’s Disease Podcast

Another Doty Land Podcast from the Madison isthmus is ‘on the air’. I worked on this project in my broadcast studio Thursday night as the temperatures sank lower and lower.

With contemporaneous accounts of smiles and trying times while dealing with a friend’s Alzheimer’s disease come stories of laughter and also tenderness.  The final chapter of the life of Albert Trull, and the way it weaved with the personal life of podcaster Gregory Humphrey as his father was dying, makes for a somber podcast.  But one that is aimed to reach out and ask what role all can play with the elderly people needing friendship and companionship within our communities. 

President Reagan Showed Early Signs Of Dementia

This is most interesting.

I recall many  years ago reading Reporting Live by Lesley Stahl and how she described President Reagan as having a glazed over, spaced out look.  There are few who think that Reagan was not to some degree impaired while sitting in the Oval Office.  More evidence mounts to support that idea of Reagan suffering from dementia while in office..  To what degree that impacted him or as a result our nation will be left for more research and historical analysis to decide.

In an interview, Dr. Berisha said he did not set out to study Mr. Reagan, but found he was the only individual with progressive dementia for whom long-term transcript information is publicly available. He chose Mr. Bush because he was most comparable in age to Mr. Reagan at the start of their presidencies, and both men served during roughly the same decade.

Age and era are important issues for comparison because they can influence language measures. Mr. Reagan was 69 when he became president, and Mr. Bush was 64. Mr. Reagan died at 93 in 2004.

The researchers found no changes in the speaking patterns of Mr. Bush, who is not known to have developed Alzheimer’s. But in Mr. Reagan’s speech, two measures — use of repetitive words, and substituting nonspecific terms like “thing” for specific nouns — increased toward the end of Mr. Reagan’s presidency, compared with its start. A third measure, his use of unique words, declined.

The researchers’ methodology was not designed to determine whether the changes were present in Mr. Reagan’s rare early news conferences, Dr. Berisha said. Other factors — like a deliberate decision to reduce the complexity of his speaking style, or the injury, surgery and anesthesia from the assassination attempt made on him in 1981 — could account for the language changes they found, Dr. Berisha said.

In 1984, Mr. Reagan’s poor performance in his first presidential debate with Vice President Walter Mondale renewed questions about his mental capacity. A study published in 1988 suggested that Mr. Reagan had some cognitive impairment during his debates with President Jimmy Carter and Mr. Mondale, but the authors said that their findings were insufficient to conclude that the changes affected.

Pat Robertson Is VERY, VERY Wrong About Divorcing One’s Spouse With Alzheimer’s Disease, Needs To Offer Nation Apology

Yesterday afternoon James and I sat in a courtroom in Dane County helping to defend the rights of a man with Alzheimer’s Disease.  Over the years we have learned a tremendous amount of information about the disease, and ways to advocate for someone so afflicted.   

One of the guiding principles that James and I have never lost sight of is that  the dignity for the man in our guardianship is never to be denied.   We will not abide it.   There are, after all, some indignities that no one should ever suffer, regardless of the disease that strikes.

Pat Robertson seems unaware of that fact.

Which leads me to the most asinine comment I have ever heard come from the mouth of Pat Robertson.  The Reverend Pat Robertson.

During the portion of the 700 Club when viewers seek the advice of Robertson  a letter was read concerning a man whose wife has Alzheimer’s.   The man is dating another woman while his wife suffers.  What should the man do?

Pat Robertson’s advice was brutal.

“I know it sounds cruel, if he’s going to do something, he should divorce her and start all over again.”

To make this the most outlandish comment from this creepy white-haired televangelist is quite a feat considering his other oddities over time.  Readers might recall one of my favorites from Robertson is the one that was uttered when New Orleans was flooding.

“The flooding of New Orleans is a sign that God is tired of seeing his creation mocked by the Mardi Gras and its perverted display of debauchery and exposed breasts.”

But the remark about divorcing a spouse with Alzheimer’s struck me on the wrong day for Robertson to be opening his pie-hole about a topic he clearly has no foundation to be speaking about.

It makes me wonder what biblical faith Robertson holds to, or what wedding vows mean to this clearly aging ever-more senile man.   I have always understood the vow to read  “for better or for worse, for richer, for poorer, in sickness and in health, until death do us part.”

It seems strange, and perverted, for someone like Robertson who always rants about the need to preserve marriage and strengthen it to then undermine marriage in such a cold and cavalier fashion.

The spouse in question did not ask to be afflicted with Alzheimer’s.  So at the time that the ‘better half’ is needed like none other, is the time Robertson states the healthy spouse should seek a divorce.

AND GAY PEOPLE SHOULD NOT BE ABLE TO MARRY AS WE UNDERMINE THE INSTITUTION OF MARRIAGE!!!

Pat Robertson needs to offer the nation an apology, and then go to some quiet zone and speak to God about where his mind has led him. Speaking in such cold-hearted and mean-spirited ways is not the way a ‘man of God’ should be conducting himself.

If the question had been posed to me I would have stressed the importance of not deserting  a sick spouse and urge them to lean on God to carry both through the turmoil.

But what do I know?

I am, after all, a liberal.

And Pat Robertson is the conservative.

The Alzheimer’s Journey

Since meeting Albert, our friend who has Alzheimer’s, I have often written about this journey on Caffeinated Politics that we all have taken together. I would like to link my writings in a neat fashion, but since WordPress is having some ‘issues’ at the present time I will add the links in a less than elegant manner. I ask that you might take the time to read them and better understand what this journey has been like.

What James and I have learned along the way we intend to provide to others, and in some small way continue to make a difference for those who need a helping hand with this disease.  We were heartened to read the kind words written by social service staff and others concerning the way we aided Albert when it came time to place him into our guardianship. 

At the foundation to all of this is the belief that we are all in this game of life together.  As such there are times when a lifting hand can aid in countless ways if we only make the effort. 

Our friend Henry aided James and myself with his generosity when we inherited his home, and we made a pledge that when the time came to return the kindness to others we would take it.  We just had no idea that the journey of repayment would be down the road with a man who had Alzheimer’s disease.

But here we are knowing this was the correct thing to have started, and one that we are committed to following through with.

It has been an emotional and educational journey, and one that Albert never had to feel like he was taking all by himself, in spite of the issues he faced.  There was a time when he called James and myself “Albert’s Mafia” as we made sure things were handled appropriately. And swiftly.  Now that the disease is more in charge of his mind he knows that we are the ones “in charge” who will handle problems.  In time that will be forgotten too.  Our names have already been removed from his memory.

It is a most damnable disease, and one that as a nation we must appropriate more funds to in order to seek a remedy.

With all that said here are my musings…

https://dekerivers.wordpress.com/2011/07/07/letter-from-home-the-journey-7711/

https://dekerivers.wordpress.com/2010/11/19/letter-from-home-111910/

https://dekerivers.wordpress.com/2011/01/15/letter-from-home-11511/

https://dekerivers.wordpress.com/2010/09/02/letter-from-home-9210/

https://dekerivers.wordpress.com/2009/11/05/letter-from-home-11409/

https://dekerivers.wordpress.com/2009/08/07/letter-from-home-8709/

On Saturday, September 17 the Alzheimer’s Walk will take place in Dane County. (Details below.) The purpose of the walk is to raise awareness of this disease, and also raise funds to help those afflicted with this most dreadful medical mystery.

Saturday, September 17
Runners: 7 a.m. Registration;, 8 a.m. Open 5K Run
Walkers: 8 a.m. Registration; 9:15 a.m. Welcome and Walk
Warner Park Shelter (Bright Tubular Structure)
1511 Northport Drive, Madison

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.

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.

Visit An Elderly Person

James and I visited our friend Albert yesterday and took him out for lunch.  He suffers from Alzheimer’s but was doing quite good on Wednesday, and so we had a nice time together.

While we waited for staff to assist Albert with getting ready to leave we met a woman who had recently become a resident at the facility.  She quietly called to us from her wheelchair as we passed in the hallway.

Upon entering her room I could see she was small and frail looking,  She held a picture in her hand.  On the small table in front of her was a small photo album.  She was the stereotypical grandmother type.  There was no way not to gravitate towards her.

She introduced herself as Nicki, and let us know that her family was coming to visit.  I sure hoped so, but to be honest I suspect they were not.  I could be wrong, as she was a new resident and perhaps her family was more attentive than that of others that reside there.  I am more than cynical when it comes to these places, and those who never visit their loved ones.  I just have seen too much over the years since we started on this journey with Albert.

Nicki told us several times how lonely she was, and how it made her hurt inside.  She spoke of repeatedly asking staff for a small can of soda, and wondered why it had not come.  I left to seek out one in the kitchen refrigerator.  “They told me I could have Coke here,” she told us, and then suggested I bring two cans so she could keep one in reserve.  In these places I have come to discover it is always the small things that seem to matter the most.

When it was time to leave James asked if it would be OK if he gave her a hug.  She welcomed the idea with a nice smile.  James leaned down and hugged   her around the shoulders.

In the hallway outside of her hearing I stated again my feelings to James about these types of facilities. 

I hate them.

Once back home I called a couple local churches near to the place she lives and asked for help. As much as I want to save all the residents of this place I can’t.  I will try to get a volunteer to start visiting Nicki, and try to reduce her lonliness.  From just the few minutes of interaction with her I know it would make a world of difference.

For those readers to this blog who have made it this far I have a request to make.

Reach out wherever you live to an older person and make a difference with a couple fresh-cut tulips in the weeks to come as spring blooms appear.  Or stop by to see an elderly person with some cookies…I bet there are plenty of bakers who read CP. 

But really you need take nothing more than yourself. Chat and smile with an older person today.

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.