7/25/2009 - Alzheimers in the news

Alzheimer's in the News - 7/25/09

Two summers ago I found out that my father had been classified as the fourth in my extended family to have Alzheimer’s Disease. My step-mother had been using the term “dementia” for some time, but once I heard my uncle use the “A Word” it seemed that everything had changed. Suddenly, I had a context for the changes I had been observing from a far. There was a history, a pattern to relate to, and suddenly the awful road ahead seemed clear. Twelve years of my childhood was spent watching my dad care for his father through his decline through the same disease.

Researchers always seem to be publishing new findings on the causes of Alzheimer’s Disease. One week they report a correlation with a lack of physical activity and the next week there is an article connecting it to a lack of brain exercise. Some make correlations with lower levels of education, unhealthy diets or alcohol consumption. Then there are studies saying that caffeine might slow the onset. The fact that aluminum deposits are consistently found in the brains of the Alzheimer’s afflicted, leads me to look askance at all of those cans I drink from and worry about all of the foil used in past roasts. Basically, everything and nothing has been reported as linked to Alzheimer’s Disease.

In reading all of the latest research, none of these theories has ever had very much resonance with me. My father was always very conscious about exercising and maintaining a healthy diet. He ran in local races and had a passion for oat bran muffins. Though he ate fish oils with gusto, for a large portion of his life he drank up to nine cups of coffee a day. But it turns out that this should have been beneficial! Although he sometimes seemed to be the archetypal absent minded professor, he was doing “all the right things.”

A few weeks ago, I read a BBC news article that linked his type of brain degeneration to elevated nitrate levels. Nitrates are found in fertilizers and insecticides. They are also elevated by the process of grilling or overcooking foods and are found in higher concentrations in processed foods. Ah-ha! Being of Midwestern extraction, processed foods and overcooking are ways of life! “Cooking” in my childhood was more often than not opening some package and adding something like water, oil and scallions. No meal was complete without meat, be it roasted in aluminum or barbequed in the summer. In the summers, farm run off in the water supply raised the nitrate levels in tap water past “acceptable” levels. As a child, I remember articles in the paper stating that the levels of nitrates in the water had now gone past an acceptable level, normally only some fraction of a percentage point, and that the populace should not drink the tap water. At this point we would charge out the store to buy bottled water only to discard this practice when the next newspaper article informed us that levels had returned to a “safe” range. For a shinning moment I thought I had found an explanation.

And then I thought that if all of the other articles had seemed so far apart from my experience, this was just another correlation rather than causation. If this is really a reason, why doesn’t everyone from my area of the country with similar habits have this problem? My easy answer slipped away as quickly as it had come.

10/10/2009 - What is left behind

One morning last week I called my father, a retired political scientist in the earlier stages of Alzheimers. He never remembers that I have called after the fact, but in the moment he is always happy to talk, or rather these days listen more than not.

In my ramblings about my life so far away in California, I mentioned that I had made inquiries about singing on a concert series at the Richard Nixon Library and Memorial. My father, who is reported to have once danced a gig in front of the television set at the news of Nixon's resignation, had forgotten that Nixon had died. When I reminded him that he passed away during the Clinton Presidency, he jovially said that he guessed he hadn't heard much from him in a while.

There is always a lot of talk in my extended family about Alzheimers, as my father is the fourth in the family to manifest these same symptoms. Many of my relatives have said that the losses in the earlier stages of Alzheimers often leave some fundamental essence of that person exposed. My great-aunt Mildred saw beauty in everything, and would tell you about it repeatedly since she could forget that she had already called your attention to the same thing 10 minutes before. My grandfather clung passionately to trying to remember certain facts, first the date of his wife's death and then the fact that she had died. Much later, he expressed a wish to find another woman, a wish that suggested there had been someone else in his heart as well.

Growing up, I always felt that my father's picture should be next to the word "inhibited" in the dictionary. We never talked about feelings, only politics or family gossip. The only passion he showed was for politics, but even that was tempered by his professor's mindset that compelled him to lecture more than converse or listen. As we were talking about the Nixon library last week, some thought came to his head and he started a sentence as we once had talked only to have the idea escape him after two or three words. I did my best to fill in the gaps. Although he no longer grasps the details in the issues of politics, he still enjoys the sport and his joy is evident in his laughter when hearing me talk about the latest antics of John Boehner or some recent fallen Republican.

In his inability to express his thoughts or even form them fully, he is able to share only his 'love of the game.' He also says 'I love you' to me more now than ever before. Although still the consummate partisan, he no longer seems so bothered that his wife is a Republican. (Long before he fell in love with this strong woman, I was raised to believe that Republicans were practically another species.) I hope that he is able to more freely share his love with her as well, especially as she is the one who's daily acts are a testament of love for him.

10/28/2009 - Happy Birthday

Today is my dad's 75th birthday. At first when I called to wish him a Happy Birthday, he couldn't quite do the math to figure out his age. After I reminded him of how old he is, he seemed to remember it throughout the conversation.

Talking to my dad over the phone is getting more difficult. He remembers many things about me and where I live, but his own daily activities and plans are becoming hazier and harder to discuss. Even talking about politics at a rudimentary level was more difficult today. Who is John Boehner? Where is his district? After asserting that Marcy Kaptur is his congressman, which she is, he then told me that her district goes all the way to the Indiana line, which it does not. It actually goes in the opposite direction along the lake and encompasses Sandusky. These slips are in the realm that was previously unimaginable for my father. Even when I was in high school, he might have left the oven on all day, come home to some small, charred shape on a pan and have no recollection of what it might have been or why he had put it in the oven, but he could tell you every intricacy of state and local political information.

In an attempt to find something else to talk about, I googled my grandfather, and much to my amazement, his full name brought up quite a bit about him. I came across a description of an archival collection at Northwestern University with documents pertaining to his tenure and work there. The PDF started with a biography that was accurate and gave me some information that I had not known before. Within the results I even came upon a sight that boasted pictures the matched my grandfather's name. Some were the facebook type photos of modern people with the same name or a kitten in a football helmet, but two of the photos were actually of my grandfather!

My dad was able to latch onto bits of information as I read it to him. He would either say that a name or some information was familiar or he would help to fill in some detail or connection with what he had been doing in his life while his father was busy with some accomplishment that graces his resume even in death.

My grandfather was a well respected and very successful man by all the standards of the world. Until I had read this official biography by his employer of over thirty years, I had not quite realized how much so. Despite his brilliance, hard work and great success, he was struck by the same problem that is now stealing my father's mind, struck at the very time that he should have been enjoying the fruits of his labor.

The year my parents were married was the year my grandfather retired. I was born the year after, the first grandchild. By the time I was five or six we knew that my grandfather had this problem. My grandmother had become suspicious when he started paying his bills twice. The former Associate Dean, Professor of Marketing was paying his own bills twice. When I was 7, my grandfather was 75, and he still knew me then. By the time I was ten, he was a bit foggy on who I was exactly. Tall for my age, even then I resembled my grandmother who had passed away a few years before. Waking from a nap he could mistake me for her without his glasses, yet outside playing with a friend he would refer to the two of us corporately as "the boys," a reference to his own two sons.

A large part of my childhood was spent watching my grandfather decline and my father taking care of him, as much as he could. Also an academic, my father would take my grandfather to his old lake cottage in Wisconsin, a place he still remembered, and they would spend the summers there together, my father "doing research" and my grandfather puttering around. One summer my grandfather painted all of the decent wood and wicker chairs white. There had been a can of white paint in the garage. I suggested to my dad that he leave some paint stripper out next and then some wood refinisher, since he wouldn't remember and could then restore the chairs. My dad didn't think that was a good idea.

Gradually and painfully my grandfather slipped away. My father, the good and dutiful man, didn't have the heart to even pull the feeding tube when he finally entered a completely vegetative state one month before his death. He finally passed away when I was 17.

Later in the day after our conversation and my bit of Internet research, I sat in a staff meeting at work staring out the window and doing a little math. What was my grandfather like at my father's current age? How old were they both when diagnosed? If I project my grandfather's case onto my father, how much more time do I have left with him? How much longer will he know me? How much longer can we have some semblance of a conversation?

And when this subsided, I thought about my own life choices and wondered how much this has effected them, remembering that I dropped out of my doctoral program only a few months after I found out about my father's diagnosis. Not that I believe that their choice of academic lives led to their manifestation of the same disease. Rather, I am overwhelmed by the seeming meaninglessness of such achievement and of academic pursuits, especially when it is lost so cruelly and so quickly. Did they enjoy their work or did they look forward to enjoying their lives later? Their academic lives and capabilities, that part of them that took up the largest portion of their vitality and strength, was the first thing to go. What can that mean?

2/6/2010 - Christmas Closet

When I was home this past December, my stepmother assigned me the task of helping my dad go through and get rid of stuff in the closet of his office. When I think back to everything that happened during that vacation, the trips that I took, friends I saw, conversations I had or tried to have, my happiest thoughts are of time spent on that bloody closet.

My father's intellectual capacities seem to be declining quickly. I already knew that he could no longer remember phone conversations the that we have or even that they had happened after the fact. I was unprepared for just how much the present moment escapes him. Maybe it is not that the actual present moment escapes him. Rather, it is that he continues to exist almost solely in the present moment and has trouble remembering the ones just past.

Either way, conversations about anything but the distant past seemed to move at a glacial speed, if at all. Ask him what he was doing when President Roosevelt died and out comes a great story. Ask him what he had for dinner or just ordered at a restaurant and he has no idea.

It is with this in mind, that we ventured into his office. In addition to separating things for goodwill, one of the major jobs was to find and shred old financial documents. Once upon a time in the not too distant past, my father had a fair number of investments. In the process of his decline, he lost a lot of money. We don't know where it all went, but by the time we realized how bad things had gotten and my stepmother finally took over his finances a great deal had been lost to shady brokers, market declines, charities, political causes, vitamin salesmen, mail order smoked salmon and God knows what else. What was left to be gotten rid of were folders, binders and old cardboard boxes full of a paper trail of now lost wealth.

On days that I was home, the scene was set with myself alternately poking about in the closet and sitting on the floor shredding. My dad would sit in a chair slowly reading through a box of old class notes. The shredder served as a rallying cry to my father. He would hear it and then come to the office to make sure that I wasn't destroying something important. Invariably he would ask me if I had brought the machine with me. I would tell him that it belonged to his wife, and he would settle into the chair to continue his slow sifting through notes and newspaper clippings.

There were some exciting finds in the labyrinthine closet. My favorite was a letter that he had written to his Aunt Mildred in 1960 when Kennedy was elected. There was also a great stash of forgotten food stuffs buried throughout the closet. I removed 3 expired tins of fish, 4 cans of soup, an expired jar of peanut butter, a box of instant mashed potatoes and a bag of potato chips, mercifully unopened. There was also a 6" X 12" filled entirely with return address labels and other thank you gifts from charities including six unopened American flags.

In the recycled envelopes with tax returns from the 1980's and canceled checks, I found record of a loan that my mother took on after the divorce. My father had cosigned. I also found a three ring binder detailing his father's slow decline from Alzheimer's. I could only read as far as the first letter from my uncle describing some of his symptoms and the infamous incident when he disappeared into the woods in Wisconsin, which resulted in a massive search with a local team and dogs. This was the end of my grandfather's summers in Wisconsin, one of the few places he remembered.

Amongst the recyclables were incredible stacks of investment and health magazines. At one time organized into labeled binders, all of them had my father's tell tale underlining throughout to show that he had read them and what he had found important or useful. I threw these magazines out with relish just as I shredded the record of the loan, I shredded the history of my father's obsessions: investment and avoiding his father's fate through living a better life. Anyone could see how futile both of those exercises turned out to be.

In the days that I worked and thinned out the closet, I got rid of a box of unused candles, bags of clothing, 4 trash bags of shredded papers and a few carloads of recycling. My dad got through about 1 box of old class notes. I kept asking him if he thought he would use it again. He would say, "Oh, I guess not." Then he would part with a few sheets of paper but decide to keep some others. At one point, I asked him what he was reading. He said is was an article about Nixon, but really it was about Bush II.

Somehow, even with the emotional baggage of so much that I was finding, this was a happy time for me. We were doing something together. We barely spoke, but it was alright. We've always been quiet, except for talking about political things or family gossip. This is just how we both are; sometimes socially inhibited but with a lot of pent up passion that spills forth into the things we really care about. We both like to putter, read and run. We enjoy planting things and looking at trees. Though not easily aroused, we both have volcanic tempers but love very deeply and loyally. These things seem to be the essence of my father, and I am sorry that it has taken his stripping bear, his slow deconstruction for me to realize just who he really is underneath all that he had seemed to be for so long.

3/31/2010

This morning I finished a book called "When the Body Says No: Understanding the Stress-Disease Connection" by Dr. Gabor Mate. I ordered the book through an ILL system to read a chapter on Alzheimer's Disease. Only one page from the end of the book, Dr. Mate wrote of the value of cultivating one's creative self and reports how whenever he actually slowed down his frenetic life, there had been a quiet, tiny voice that encouraged him to write. Today during lunch at work, I met a woman who is a writer. When I made some comment about the drudging discipline of being a writer, she replied that the writers she knows are much more compelled to write than forced.

When I was a child, I wanted to be a writer. Other dreams came and went, but from the age of 3 when I started dictating my first stories to my mother, I wanted to be a writer. By high school, my efforts were leaning towards other areas but somehow this seed lived on, even as the wellspring of earlier worlds and stories became lost.

Now 34 years old and two degrees in music later, I find myself needing to write just to process what is happening to my father. Yet this exploration is only partially about my father and at least 95% about me, my struggle and my fears.

In the past I have written of my frustrations with the research I've read about the causes of Alzheimer's. None of the lifestyle or dietary risk factors have seemed to apply to the four members of my family who have been struck by this. The question behind the 11 page chapter on Alzheimer's that drew me to this book is, "Could early life experience, emotional repression and lifelong stress predispose to Alzheimer's?" (p. 158) Dr. Mate goes on to talk about the few studies that have been done that point to this correlation and then uses a number of case examples to illustrate his suspicion.

And here I finally see something that seems worth investigating. Emotional repression is the one characteristic that all of my relatives who had Alzheimer's clearly shared and the one quality lacking in those of similar age and gene pool who kept their marbles to the very end. I used to tell my friends that in the picture dictionary of adjectives, my dad's face would be next to the word inhibited. He had such a hard time showing affection. He only showed true and unabashed enthusiasm for politics and only showed anger when in a terrifying once-a-decade-type rage.

At first I think of how lucky I am that I am not like my dad. The illusion of safety descends. Soon honesty comes a knocking and I know that I am so much more like my dad that I might ever be able to admit. "Peas in a pod" was a phrase one friend used to describe me and my dad together. I know I have a lot inside me, so much emotion and so many thoughts striving to break through, but does anyone else know this? How much do I actually show this?

During my disastrous first teaching job after some rehearsal where I had gotten particularly excited, a little red headed tenor said to me that he was finally seeing who I really was. Had I been completely hiding myself from them for the miserable past year and a half? My voice teacher during my masters degree studies once called me an "Ice Queen" and commented that bawdy songs could be especially effective coming from me because of my general demeanor. One of my early conducting teachers commented that my problem was not technique, rather it was as if I were conducting from behind a veil.

It seems that in the eyes of others, I have quite a lot in common with my father.

Perhaps my desire to write, that little voice inside me, pushing me to get back in touch with myself, is pushing me to be honest with myself even if I feel unable to do so with anyone else.

When I look at my life and at the pursuits which have drawn me to them, these are always the pursuits that require the most openness, the most expression and the most personal and emotional risk. I do them again and again, falling and failing, round and round. Somehow the pathway was always open for me at the piano, but I didn't want the piano in that way. I wanted the harder option so that I might struggle to become myself and to learn how to let that person out in the ways that my father has never been able to.

9/23/2011

Dad's Maxims

1) Heat Rises
2) Power corrupts. Absolute power corrupts absolutely.
3) Ninety percent of life is just showing up.
4) He who controls the language controls the debate.

I woke up this morning thinking about these little sayings that my dad has always repeated as absolute principles of his universe. Perhaps I am reminded of these because I suffered through some of the latest Republican debate last night. All of them seemed to apply directly.

#4 - He who controls the language controls the debate.

Since the democrats have adopted the language of the far right, I really have no hope in any outcomes that I would desire since the battle seems to already be lost. ("Entitlement Programs" like Social Security, unemployment insurance and medicare should be defined as "earned benefits" from a lifetime of work. "Obamacare" is used by the right and left as a term for the very weak and misguided attempts to put a band aid on one of the major crises in this country.)

#3 - Ninety Percent of Life is Just Showing Up.

With apologies to Woody Allen, to whom my dad never gave any credit, the Republicans last night showed up. (Look how much this did for Dennis Kucinich four years ago. It did, however, give him more prominence to make him a lightning rod for the Dems and a tempting target for GOP gerrymandering. I still love Dennis. Sigh.)

#2 - Power Corrupts, Absolute Power Corrupts Absolutely

Newt Gingrich - Do we remember what was he doing with regard to his own dying wife and his new girlfriend while he was impeaching Clinton for a blow job? How much exactly is his line of credit at Tiffany's? At what exotic locations was he vacationing while his campaign staff was left holding the bag and looking for funds without his assistance?

Michele Bachmann - How much money has your husband's clinic with questionable social aims received from the government? How is this consistent with your professed ideology?

Ron Paul - He actually seems pretty consistent, but he never seems to have had any power, so I guess this doesn't apply here.

Gov. Romney - He has run away from every position that made him a fair to middling Govenor as opposed to atrocious, so perhaps his is more of a desire for power corrupting.

Gov. Perry - He calls himself a Christian but is proud of executing other human beings?

#1 - Heat Rises

Gov. Perry seems to be topping the polls these days.

11/4/2008

Elections tend to produce a feeling of nostalgia in me. Growing up as the daughter of a political scientist, election season was exciting and election night always a holiday. I remember the overpowering joy of speeding on my bicycle through the array of Ohio fall colors and political signs mixed together. Also mixed together in my mind are memories of political booths at fairs and festivals, fundraisers, sausage and chicken paprikash dinners and Democratic Party Headquarters on the nights of Dukakis’s slaughter, Clinton’s first win and John Kerry’s convention speech.

Upon retirement, my dad went to work with vigor on many of the political causes he had championed all his life. He worked very hard for Kerry four years ago. In an email to me a week before that election, he told me that the excitement and ground game of the campaign was like nothing he had ever seen before and was hopeful that a high turnout would put them over the top.

At Christmas in 2006, my dad was still glowing over the results of the midterm elections. In his car, papered over in political bumper stickers (much to the mortification of my Republican stepmother), my dad regaled me with stories of Ohio’s new progressive Senator, Sherrod Brown and read aloud articles from the magazine the Progressive as I drove from Toledo to Columbus. At the time, I complained to my friends that it seemed I’d never been able to have a real conversation with my dad. All we had ever been able to talk about was politics.

Almost two years later, I would give anything to have that type of conversation with my father again, the kind of conversation where he could share with me his passions and his joy in what he holds dear in the world. Now I know that my father’s declining ability to remember things has finally been classified as Alzheimer’s, and the biggest wakeup call for me is that he has not been involved in this campaign. Given his assessment of the Kerry campaign, I wondered what he would say if he were involved for Obama. Last week, Obama HQ called him to see if he would make phone calls on Saturday. He was excited to be of use, and drove off that afternoon. About an hour after he should have been there, they called to see where he was. He arrived home about 2½ hours later. He said that he had made calls, but had nothing to say about the energy of a campaign ground game that appears to be unprecedented in modern politics. Soon it will be time to retire his politically papered Honda as well.

Although it is now me doing most of the reading and talking about issues, we are still able to talk and we are still able to share our joy in politics. I am fortunate that maybe tonight, we will be able to celebrate together by phone and share one more big and exciting win.

The not quite long enough goodbye

Unbeknownst to about everyone I know, I have had a blog for a number of years.  I've written and posted many things, but neglected to tell anyone.   This arrangement has helped me sort my thoughts while maintaining the freedom to be honest with my writing.

Amongst my postings are many things about my father.  He passed away on Nov. 15, 2012 about 5:10 in the afternoon, EST. He had Alzheimers and had been declining slowly for a long time.  Over the past month and a half he went down much more quickly that I could have imagined.

I am reposting some of what I wrote here as a tribute to this man that I love more than I can say.  The title of the blog is a reference to a book about Alzheimers called, "The Long Goodbye."