All That Remains is Love

Mom copyIn her condolence note, a friend reminded me of my blogs talking about my mother’s dementia and my struggles managing her care and her life.
Reading through my blogs of a year or two ago, I revisit our struggles. How angry she became when she could not keep her dog or her jewelry in assisted living. How sad she became when she repeatedly told me that she wanted to go home, even though she was in the condominium where she had lived for sixteen years.

I revisit how terrible I felt about moving her to the full-care facility. The social worker told me that other residents had been complaining because Mom did certain anti-social things such as lying on the couches of the living room during cocktail hour. Complaints accelerated when she was cursed with horrific gastrointestinal distress. Because her bouts came on so suddenly, she would rush to use the toilet in other residents’ rooms. This was an invasion of privacy that continued for many months until the facility insisted she had to leave.

I hated to put her in that wing where my father had suffered and died. I could barely force myself to walk in there.

We resorted to loving lies. The patient-care specialist instructed me to take Mom out to lunch. During that time, the staff moved her belongings to the new room to make it look familiar. Feeling like Brutus, I brought her back. Mom immediately said, “Why are you taking me here? This is not where I live.” The specialist said, “You are just staying here temporarily. Your room has been flooded with stinky sewer water. It needs to be cleaned up.”

I knew this was the beginning of the end. I was so sad. Yet, I soon realized this was the best place for Mom. Her condition had deteriorated to the point where she needed the constant attention of the full-care aides who were like angels.

Despite all her infirmities, my mother always smiled and expressed her appreciation to the staff and to me. Despite the profound grief of watching my mother slip away, we shared many beautiful moments. When everything is stripped away – home, clothing, activities, even the ability to walk and feed oneself, all that remains is love.

I recall Lori’s Lesson: “Be grateful for every gift.”

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Will 2014 be the Next 1849?

In 2014, St. Louis faced a cataclysm. On August 9, a white police officer, Darren Wilson, shot and killed a young black man named Michael Brown in Ferguson, Missouri. Protests started the next day and continued for over two weeks, only to break out again the night of November 24 when a grand jury announced its decision not to indict Wilson. As a result, St. Louis has earned the reputation of the most segregated city in the United States. People are scared to visit St. Louis because they think it is too dangerous.

In 1849, between destruction and disease, St. Louis had it even worse. The city of St. Louis almost perished between the Great Fire and the Cholera epidemic. And yet the city emerged from that year stronger and better.

On May 17, 1849, fire broke out on the White Cloud, a steamboat moored on the city’s riverfront. When the rope tying it to the dock burned, the ship turned into a floating torch that set 31 other steamships aflame. Soon flames leapt to the wooden warehouses on shore and threatened to take down the entire city.

Only the courage, daring and self sacrifice of a volunteer fire captain named Tom Targee saved St. Louis from complete destruction. Targee came up with the idea of creating a firebreak by blowing up buildings to stop the conflagration from spreading. A barrel of gunpowder exploded as he was carrying it into the Phillips Music Store on Market Street, killing Targee.

Only two other St. Louisans lost their lives during the Great Fire, but fifteen blocks were leveled at a time when St. Louis stretched just three-quarters of a mile back from the Mississippi. Damages totaled $5,000,000 to $6,000,000, worth close to $190,000,000 today.

Simultaneously, St. Louis was in the throes of a cholera epidemic that carried away 4,547 lives. With a total population of 105,000 according to the 1850 census, St. Louis was harder hit in proportion to its population than any other city in the United States.

With property lost on one hand and lives on the other, St. Louisans came together as they never had before, and a modern city was born out of the ashes of a quaint, French town. With insurance money pouring in, merchants replaced charred warehouses with state-of-the-art commercial buildings. The city government appropriated funds for the first sewer system to prevent future outbreaks of cholera, putting St. Louis in the vanguard of urban environmental planning. The city also convened a Board of Health, and citizens voted for a tax for public education that gave the city some of the best public schools in the nation.

Can we the citizens use this tragedy to inspire us to create a better city, a model of racial tolerance for the nation? The Ferguson Commission Report challenges us to do so. In an 198-page document, the Commission calls for specific measures to create: Justice for All, Youth at the Center, Opportunity to Thrive and Racial Equity. These proposals are not Band-Aids to solve small, local problems, but thoughtful measures to change attitudes and ways of life, changes that will make St. Louis a great place.

Let us hope the tragic occurrences of Ferguson 2014 may provide the inspiration for St. Louis to come together.Great Fire of 1849

St. Louis and the Book

Laclede            St. Louis is the home of T.S. Eliot, Marianne Moore, Kate Chopin, Tennessee Williams and Howard Nemerov. It is not surprising that St. Louis has nurtured so many great literary figures because the city had had a commitment to literacy and literature since its founding.

Although the father of St. Louis, Pierre Laclède, intended the new city purely as a headquarters for trade – it wouldn’t even have a church for eleven years – reading, books and literature were important to him. Not only Laclede but also his common law wife, Marie Therese Chouteau, was able to read. This was remarkable at a time when the literacy was calculated upon the ability to write one’s name. Moreover, the literacy rate in 18th century France, their native land, was only 29 to 48 percent for men and a mere 14 to 27 percent for women (depending upon whether you lived in the countryside or Paris).

Perhaps because they took their fate into their own hands, the people of the New World placed great value on the power of the written word. Literacy rates were higher here in the 18th century than in the Old World: 60 to 70 percent in the British Colonies versus 48 to 60 percent in England.

The founder of St. Louis took great pride in his library, and it marked him as a gentleman. The inventory of Laclède’s estate included some 200 volumes. At a time when a book cost nearly as much as a common laborer earned in a week, such a library denoted great wealth as well as a lifestyle that placed value on reading.

Mme. Marie Thérèse Chouteau was a liberated woman before such a concept existed. She called herself widow although her husband was not dead. Even though she bore Laclède four children, she chose not to marry him when her husband did die because Laclède was in debt at the time. A business and social leader in St. Louis, she was aided in her success by the nuns in New Orleans who had educated her.   Being able to read was a noteworthy achievement for a woman of the time.

Laclède must have had a great deal of faith in his 14-year-old stepson for he entrusted Auguste Chouteau with the task of clearing the site and building the first cabins for the fur trading post that would become the city of St. Louis. Because Chouteau could read and write, he was able to commit the very founding of the city to literature. In a treasured document now enshrined in the Mercantile Library, Chouteau wrote: “I arrived at the place designated on the 14th of February and, on the morning of the next day, I put the men to work.” He went on to say: “that he had found a situation where he was going to form a settlement, which might become, hereafter, one of the finest cities of America – so many advantages were embraced in this site, by its locality and its central position….”

Auguste must have admired his step-father in turn for he followed him in loving books. Indeed, Chouteau bought the first eight books in his library from Laclede’s estate. When he died, Chouteau’s library numbered 600 volumes.

 

 

Love my mother, hate her dementia

My mother has dementia and part of her condition is that she obsesses about things. Lately she has been obsessing about her jewelry. Because her assisted living facility has a policy preventing guests with dementia from keeping valuable jewelry in their rooms, I put my mother’s jewelry in a bank safe. In a rational moment, she thought this was a good idea. Now, however, she wants it in her room and says she doesn’t care if it gets lost or stolen. She called and left an angry message saying she didn’t want to see me if I didn’t bring it to her.

I know this is just her dementia talking. She used to have such good judgment. She obsesses about other things too. She called a friend about a ride to bridge three or four times and me just as often. But it didn’t hurt my feelings when she was worried about her ride: she wasn’t angry at me over the ride.

??????????????????????????????????????????????????????????????????????????????????I spend so much of my time taking care of my mother that I have become the boss in her eyes. She knows I am in charge of her life now, and she doesn’t like it much. (Neither do I but who is going to tell her that.) When she gets angry over her loss of control, she lashes out, sometimes at me.

It really hurts. I need to separate myself for a few days when she does this because I feel sorry for myself and that can translate into lashing out right back at her. I do a little self talk where I remind myself that this is her disease talking, not my mother.   I get some exercise. Eat some chocolate. Remind myself how loving and appreciative she can be. Reread Lori’s Lessons. Whatever it takes to get my equilibrium back.

Lesson number 20 resonates with me now. The biggest challenge for your caregiver is: to hate the disease, really loathe it, but not resent the person who has it. He or she may know intellectually that it is not your fault, but every caregiver has moments of thinking: “Why me? What did I do to deserve this?” They have to set that aside and move on, for themselves as much as for you. Still, to underestimate the challenge of dealing with their emotions would be not only naïve but potentially destructive.

 

 

Sick at heart over Ferguson

Friday, August 15, 2014

Friends from other cities ask if I am scared. Even as I wrote this yesterday, police were spraying tear gas on protestors in Ferguson, Missouri, a suburb of St. Louis about twenty-five minutes from my home. On Saturday afternoon, a white police officer shot and killed Michael Brown, a young, unarmed black man, there. While the name of the officer has been withheld, police sources say that Brown had reached into the police car to take the officer’s gun, leaving the policeman with facial wounds. Brown’s friend tells a different story that Brown was running away with his hands in the air.

Outrage resulted over the death of this young, unarmed man. Since Saturday, protestors have gathered in Ferguson, in other parts of St. Louis County and around the country. In Ferguson, they have looted and burned stores and thrown rocks and Molotov cocktails at police. As a result, police have sprayed tear gas and arrested marchers, including Washington Post and Huffington Post reporters and a St. Louis alderman. The policemen donned riot gear that makes them look like U.S. marines. A photograph of these commandos standing in a phalanx confronting protestors makes suburban St. Louis looks like Beirut.

Race underlies the conflict and pain. A young black man has died; a white officer shot him. An article in yesterday’s New York Times describes Ferguson as a city afflicted by white flight: “While most of St. Louis County is white, Ferguson and neighboring towns are predominantly black. Blacks were once a minority in Ferguson, but the city’s demography has shifted in the last decade after white families moved out to surrounding suburbs.” The article quotes Richard Rosenfeld, a crime trends expert and professor at the University of Missouri-St. Louis, who says Ferguson, a town of 21,000, is a “relatively stable, working and middle-income community. But it does have its pockets of disadvantage.” Today’s Wall Street Journal says that the suburb’s racial makeup changed to predominantly black over the last decade, but the Ferguson force remains 94 percent white because police tend to stay on the job.

Perhaps the tide is turning for the community. Yesterday, the Post-Dispatch reported that a young mother took her children to clean up their neighborhood Quik Trip that had been burned and looted. She inspired neighbors to do the same. Ferguson plans to hold its Saturday farmers market as usual. Vendors there will be selling tee shirts that read: I heart Ferguson. I intend to shop in solidarity.

Yesterday afternoon the Governor turned riot control over to the Missouri State Highway Patrol under Captain Ronald Johnson, an African-American officer who had grown up near Ferguson. Instead of facing off against a peace march, Johnson walked alongside the protestors. Instead of wearing paramilitary gear, he wore shirtsleeves. The message of peace and solidarity was clear.

I am not at all scared, but I am sick at heart.

 

Ferguson tee shirts

Tailor exercise to fit your life

Last month a friend died tragically while riding his bike. He had had heart issues in the past and was making a concerted effort to keep his weight down and to exercise. A few days later I read an article in a health newsletter that said: “Excessive exercise, especially if you’re still focusing on traditional endurance cardio like long-distance running, can be particularly troublesome if you have a heart condition.” We wondered if twenty-mile bike rides had stressed Ralph’s heart so much that it gave out. On the other hand, his conscientious program of diet and exercise probably added years to his life.

My husband, Jake, and I are also talking about revamping our exercise programs to fit our changing lives. My husband has hip issues, but the doctor says he can avoid a hip replacement by beingParty careful. Two weeks ago he pulled a muscle in his calf playing squash so he has been taking it easy. We talked about ways he can get exercise while taking it easy on his leg and hip – no simple matter. As for me, this summer I am backing down to playing tennis only once a week instead of three times because I am caring for my aged mother. The less I play, the worse I get. It is frustrating to know that soon I won’t be able to keep up with former tennis partners.

We just returned from Colorado. Four years ago there, we hiked for hours high into the mountains and biked all day. This time no biking or hiking. We were, however, able to take a beautiful walk through a meadow.

Then I think about Lori, so tenacious, so spirited as she tailors her exercise to fit her life with Parkinson’s. I will try to stay as positive as she does and pay attention to lesson number ten: Set realistic, achievable but challenging goals. Goals will move you forward because they create tension between where you are and where you want to go. But, you may have to redefine success. Before you got blindsided by your challenge, you measured success in certain ways. Now your situation may make you measure success differently. Before I had P.D., I was an aerobics instructor. Now I am proud to be able to go ballroom dancing.

 

 

 

 

 

Buying Time for a Cure

Bob Patin jubilantly emailed a recent article from the Chicago Tribune reporting progress in human stem cell research – a significant discovery proving that adult skin cells can be cloned to produce embryonic stem cells. But more about that later.

Scientific work like this gives Lori hope that a cure for her Parkinson’s disease is within reach. Parkinson’s is a progressive, degenerative disorder that affects the central nervous system. Until now, there has been no cure, only medications that mitigate symptoms. Lori, in her determined, tenacious way, does not sit back and bemoan the lack; rather she believes her cure is just beyond the horizon. Waiting for that cure to arrive, she works hard at keeping her symptoms at bay by exercising four hours a day, taking harp lessons and having a massage, acupuncture and Feldenkrais® treatment every week, among many other things. Her spirits are good because she knows she is buying time until that cure is found.

Allow me to explain the importance of recent research. First, some basics about Parkinson’s. On a biochemical level, a dearth of dopamine in the brain causes this disease.  Dopamine is a neurotransmitter that sends signals to the rest of the body to control movement, among other things. By the time symptoms manifest, dopamine-generating cells have been 80 percent destroyed.

Stem cell research is critical to finding a cure because scientists believe dopamine-generating cells can be developed from embryonic stem cells. The Michael J. Fox Foundation, for example, supports work in stem cell research for Parkinson’s, disease. MJF funded the original proof demonstrating that ES cells could provide a robust source of dopamine neurons.

The catch is that only embryonic stem cells, not adult stem cells, can do this,Embryonic Stem Cellsand they are not readily available due to ethical considerations about harvesting cells from human embryos. The article Bob sent, “Scientists clone human embryonic stem cells from two adults,” offers the promise of using adult skin cells to clone human embryos specifically for the purpose of creating these critical cells.

There is always hope. Buying time is what matters.

 

 

 

 

This book about Parkinson’s is not about Parkinson’s

kilt

Although the subtitle of Lori’s Lessons is What Parkinson’s Teaches about Life and Love, it isn’t really about Parkinson’s disease. Parkinson’s is just the platform for Lori’s attack on the most difficult problem of her life. I first learned this two years ago when Bob emailed me about writing the Patins’ story.   He said: “It isn’t really a story of Parkinson’s but a story of fighting anything thrown at folks and the kind of attitude, help and processes that all combine to deal with any challenge. Parkinson’s is just the platform.”

If I had to sum up all that I admire about Lori in one word, that word would be attitude. Her attitude is remarkable. She is absolutely forthright about telling people her limitations and needs but is never a drama queen. She doesn’t feel sorry for herself. She is determined to make the best of her life and if she doesn’t find the right way to do it the first time, she will find another way. “I am absolutely determined that this is not going to get to me. I will not let Parkinson’s control my life. My destiny is still in my own hands.”

Bob explains, “I was trained long ago in the world of work that you can use any situation to your advantage if you approach it the right way. In this case, with Parkinson’s, we say to ourselves, “We acknowledge that this is ugly, but how do we actually make it work for us?” How do we force ourselves to get into a mindset that says that we can turn this ugly situation to our advantage by thinking about it creatively?”

Lori has thought really creatively and draws upon every resource to take
a 360-degree approach to her problem. Her attack on Parkinson’s is like a wheel crushing down on the enemy. She uses medicines (the rational approach), the spiritual approach, friends and family (the community approach), diet exercise and sleep (the physical approach) and the assistance of caregivers.

Mind Games and Food for Thought

 

My father died form Alzheimer’s and now my mother has dementia. With this genetic inheritance, I read everything I can about taking care of your memory. Yesterday I posted a list of foods that improve memory: salad oil, fish, dark-green-leafy vegetables, avocados, sunflower seeds, peanuts, red wine, berries, and whole grains. I was mildly shocked because I eat all these foods except sunflower seeds as much as I can because I like them. Better double down on sunflower seeds.

I also do Sudoko every day. Research says Sudoko and crossword puzzles make new memory connections. “My guess is that playing them activates synapses in the whole brain, including the memory areas,” says Marcel Danesi, PhD, author of Extreme Brain Workout. Whereas scientists used to believe brain development was static after a certain age, they now recognize neuroplasticity –  the brain can develop new pathways. Games and memory exercises encourage neuroplasticity.

Lori is well aware that Parkinson’s can lead to memory problems so she exercises her brain just as she does her body. She says, “To exercise my memory I play bridge twice a week for three hours at a time. And that has helped a lot because there is so much memory in the game. When I was in the hospital, someone brought me Suduko, a game of number patterns. That’s good for your memory too. I do more reading than I used to, which also helps me with words I can’t come up with. I went to a store called Marbles that sells games, mental exercises and other tools for your mind. I bought a memory game that is about an art auction where different things are auctioned off and they are all pre priced.   You have to remember what the pre price was and what the final auction price was. All of these may not protect my ability to function intellectually, but they surely seem to help. And, you know what? They’re fun. I’ve learned that if I can make mental exercises fun, I’m far more likely to do them.”

 

The wheel of life

Lori and I talked a great deal about how she thinks about fighting Parkinson’s. She fights it with her whole life – mind, body and soul.  While that is a very hard concept to wrap the mind around, the best way she could make me understand was the metaphor of a wheel.  All of her efforts combine to crush down on her enemy with the rim of this wheel. Every spoke of the wheel contributes to the crushing power of the rim to fulfill Lori’s goal of living a full, normal, joyful and healthy life.  Lori’s wheel has five spokes: medicine; friends and family; caregivers; exercise, diet and sleep; and attitude and spirituality.  The beauty of this metaphor is that all five spokes work together.  There is no hierarchy; each spoke is as important as all the others.

My daughter who is training to teach yoga was really taken by this metaphor. She explained that yoga teaches a wheel of life broken into eight parts.  It is important to have all eight parts in balance.  Although Lori talks about five parts, there are really eight. One spoke is friends and family, another exercise, diet and sleep.  If you separate those, Lori’s wheel has eight parts too.

Moreover, Lori’s eight-fold wheel has parallels with the yoga wheel. For the yoga wheel’s recreation, Lori’s wheel has exercise.  For community, Lori has friends.  For health, eastern and western medicine; for relationships, family; for personal growth, attitude; both have spirituality.  They differ in that the yoga wheel has career and money while Lori has diet and sleep. That is quite a substitution.
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