The questions of HONY

One of my daily addictions these days, along with millions of other people around the world is "Humans of New York" (fondly known among fans as HONY) the photography and interview project of Brandon Stanton. Brandon is a genius at capturing people both visually and through their words. You can view his work on Facebook at https://www.facebook.com/humansofnewyork or his blog at http://www.humansofnewyork.com/. Brandon also has a top selling book of his photographs interviews available everywhere. 

Brandon has developed a series of stock questions that he has found help unlock the interesting stories of people's lives. Among them are:

"What was the happiest moment of your life?"
"What was the saddest moment of your life?"
"What was the most frightened you've ever been?"
"What's your greatest struggle right now?"
and finally "If you could give one piece of advice to a large group of people what would it be?"

Spending time reading the life stories that Brandon elicits, has gotten me to thinking about my own answers to those questions. I woke up this morning about 4:30 AM and spent the next ninety minutes thinking about those questions. Here's what I concluded:

"What was the happiest moment of your life?"

The summer of 2009 when I got to paint a mural for my college. Everything about my life was good, my parents were still alive, my husband and I were happy and healthy, and I got to spent an entire summer rediscovering the art that I loved so much (and getting paid!). It had been years since I'd done any painting, but it all came back to me, and I created something of beauty that will endure for years and be appreciated by many. 

"What was the saddest moment of your life?"

March 2012 when my mother and my dog Rosie died exactly one week apart. My mother was 89, had severe dementia and she frequently expressed the wish to die, so there was some sense of relief but still of course sadness, then when our beautiful, young dog suddenly became very ill two days later and died exactly a week after my mom the sadness simply overwhelmed me for weeks. 

"What was the most frightened you've ever been?" 

This is actually a toss up between two things. The first was in May 1982 on a Tuesday morning when I was told I had melanoma and that I had to report to the emergency room for surgery within two hours. The trauma of the diagnosis and immediate surgery was multiplied by the emergency room setting, where while I was being operated on with a local anesthesia an older woman in cardiac arrest was brought in to the cot next to mine, and I was totally aware of the doctors' unsuccessful efforts to revive her; she was declared dead and removed all while I was still being operated on. I was never more aware of my own mortality.

The second was probably a more sustained terror. In May 1980 in fear of my life, I had to move out of my apartment in the middle of the night (with the full cooperation of my landlords) to escape an alcoholic boyfriend who had suddenly turned violent. For several weeks I lived in fear that he would find my new apartment. He never did and life settled down.

"What's your greatest struggle right now?"

This is the easiest answer: making the changes in diet and activity to get a handle on my diabetes and improve my health so that I can look forward to enjoying the rest of my life and actually do all the things I've been planning for my retirement. 

and finally "If you could give one piece of advice to a large group of people what would it be?"

It's the same advice I give myself every single day: Each day is a gift, even the most difficult days. Do not pray for the day to end, do not wish your life away. Pray instead for the strength, patience and wisdom to live fully in each moment." 

 So now, even though its unlikely I'll be going to New York City any time soon, or even less likely encountering Brandon Stanton, I have my answers ready!

"I Remember Mama"

That was the title of one of my mother's favorite play/movie/TV shows - and the books on which those were based. I hadn't thought of these in years. There was actually two books in the fictionalized memoir by Kathryn Forbes about her Norwegian immigrant grandmother.

My mother is the one who taught me to love reading. She read to us almost every night. Unlike the photograph which my father staged, normally she would sit on a stool or in a chair in the hallway between my room and my brothers' room. We would lie in bed in the dark and she would read out-loud to us. She would read one or two chapters and leave us waiting for more the next night.

Among the books that I remember her reading to us are every single one of P. L. Travers' Mary Poppins books. The Mary Poppins of the books was nothing at all like Disney and Julie Andrews' Poppins. She was crotchety and plain and difficult, but also magical and wonderful as well. She also read us the 1950's classic Beverly Cleary series about Henry, Ramona and Beezus.

The book that my brothers and I loved the most, and the book that really transformed my life was Robert Heinlein's Red Planet. My brothers and I loved the alien "Willis" the Martian "bouncer." The book was so enchanting, that I started reading ahead of my mother during the day time (although I still enjoyed hearing her read it out-loud). That lead me to the "harder stuff" of science fiction, which I began to devour.

Before I was old enough to have an "adult" library card, I would go into the main part of the old San Mateo Library (one of those built by Carnegie of stone, marble and lots of steel), and pull down Galaxy Readers, and the Years Best Science Fiction, and read story after story in the reading room while my parents did their Saturday shopping in town.

With her nightly story time, my mother made reading a wonderful, delightful, guilty pleasure that I could not wait to embrace for myself. She initiated me into that magic world that so stimulated my intellect and imagination.

One of the saddest things about the dementia that took over my mother's life in the past three years is that it robbed her of the ability to read. She could not concentrate enough to follow the thread of even a short story. She could read the words - she'd read complicated documents out-loud to me on the phone having no trouble with any of the words, but she could not follow what she read.

Bulletins from the Land of Dementia

It has been two months and six days since my brother settled my mother into a pleasant, small home-based care home near him in San Diego.

My mother likes the people who work in the home and she has made friends among the other residents. She likes the warmer weather in San Diego and never complains any more of being too cold. She says she sleeps well, which was one of the biggest problems with her living alone as she imagined all types of dangers and anxiety and cold often interfered with her sleep. She loves the food (simple, home cooking with fresh ingredients).

Yet despite all this she has made herself almost frantic at times with the absolute conviction that she MUST leave and go somewhere else. She is not sure where, she knows she can't care for herself, and knows there is no family members who can take over her full-time care. Like all dementia patients my mother has developed elaborate delusions utterly divorced from reality, that have convinced her that she cannot remain in this care home.

She cannot help this, it is a symptom of the disease that is destroying her mental abilities. There is no way to fight the delusions of a person with dementia; there is no reason, no evidence that can dissuade the person to let go of their delusions. Any attempts often serve to strengthen the obsessions rather than enlighten. It is extraordinarily frustrating to Charlie and myself to see her struggle with these totally imagined demons, and know that there really is nothing we can do. In fact, the best thing seems to be for us to take some steps back away from her, fewer and shorter visits by Charlie, fewer and shorter phone calls by me.

The thing that strikes me about my mother's delusions, however, is that they are woven from the habits and attitudes of her entire life time. My mother always was a control freak. She always had to know what was going on - not only with her children and family members, but with her friends and neighbors. Then not content merely to know, she had to solve everyone's  problems - frequently when such help was neither desired nor helpful.

She trained us children early to stop telling her our concerns, if we didn't want her to bulldoze into our lives with her ten point action plans for how to solve our problems. Since her life as a housewife gave her no experience or insight at all into the work and social lives of me and my brothers her action plans were generally worse than useless, they were highly judgemental and intrusively critical. Her obsessive controlling actually drove my youngest brother to completely abandon her and our entire family, disappearing from all our lives.

My mother's delusion is that she is responsible for what happens to everyone at the care home; she believes that she is responsible for all the other people's safety and health and welfare. She believes that she that she was brought to the home for a trial "job" of working at helping to run the home. But that she did not do a very good job of it, because as she told me today - it is a very, very hard job and she can't do it. It is because she can't do the job of running the care home that she says she must leave.

She also believes that as nice as the people who work there are, that they are not really competent (she's never thought anyone was competent in her whole life - certainly none of her children or neighbors or friends). Her evidence of this lack of competence is that they do not do anything about the dire situations that are total fabrications of her demented mind. She naps during the daytime (as most of the residents do) and often has vivid dreams that are completely real to her. She reports the most fantastical events to me when I call.

She reported to me Saturday that a man died sitting on a bench in front of the house and that the people in the house wouldn't do anything about it for hours and hours, and that they didn't take care of the problem properly at all. While deaths in elderly care homes do certainly occur, no one died on the bench in front of the care home on that day. It was entirely a fiction.

Charlie and I try to tell her that she does not need to work, that the people are there to care for her, and that cost of her food and lodging and care is already paid. None of these things change her view. She tells me that the people there are not competent to take care of her. Sometimes she says there is no money to pay for her care, sometimes she accuses Charlie of stealing it all. But she refuses to believe that she can relax and enjoy and just be there.

I am fascinated by both the distortion of thinking and reasoning that dementia produces, and by the continuity that there is between the patterns of personality and behavior from the past - the obsessive control freak, who has to solve others problems for them whether or not such assistance is desired. The sum of our lives, our attitudes and our actions do seem to matter even in dementia.

Bulletins from the Land of Dementia

My mother has in recent months slipped over the edge into mental non-competency. Before Christmas my brother Charlie moved her from her home in the San Francisco Bay Area down to visit over Christmas with him and his life partner Claire, then New Years Eve got her settled into a small, pleasant 24 hour care home ten minutes from his home.

She is not happy about this, but then she wasn't happy at home for the past few months, where she believed strangers were invading her home on a nightly basis, causing her "papers" to disappear, moving things that she "knows" were on the table, and turning her gas heater off in the night causing her to get cold.  She told me one day, that the doors and windows were all locked so the people must be crawling in through tiny cracks in the roof and ceiling. Sometimes she would say that she hadn't seen them, just heard them, but she knew they were there, because how else could one account for it getting cold - someone had to have messed with the heater - or for the papers not being where she'd left them. But other times she would describe in detail things the people she had seen, what they'd looked like, what they'd done and what she'd said to them.

As a sociologist the workings and mis-workings of the human brain are not within the scope of my professional expertise, that's the realm of psychology. However, I've been reading and thinking about the problem, and think that I have a plausible hypothesis for what is happening in her brain.

An example from my own experience today will help illustrate:  I came home early from work today because it was snowing heavily and predicted to get worse. There were no students coming in for advising, and most of us left early. I've been a bit sleep deprived recently, so when I sat in my recliner to watch some cable news punditry, not surprisingly I dozed off several times between the interminable discussions of what may or may not happen tomorrow in the Iowa Caucuses. At one point, I was awake enough to know that my husband John had come out to sit down and watch a little with me, and that we exchanged a few words about the Iowa Caucuses. But then I drifted off and had an extremely vivid dream of an extended and lively conversation between John and I about some of the candidates. It seemed very real, and I was quite annoyed with John because instead of answering me himself, he kept playing a recording of Newt Gingrich saying something absurd. When I was roused from my nap by a cat pouncing on my lap (happens a lot at our house), the vividness of the dream lingered and seemed like something that really happened.

But I knew immediately that it had not really happened; first of all my husband was no longer in the room with me, and I know for a fact he doesn't have a fancy silver iPad that he can play video of Gingrich on, and that he'd never record anything by Gingrich anyway, much less play it over and over. I quickly was able to check the very real seeming conversations and interaction of my dream against a list of things that I knew about reality, and immediately classify the experience as a dream and "not real".

But my mother, suffering from dementia, no longer has the ability to reality check in that way. For her all things are possible - so if she "sees" something, or "hears" something while dreaming or dozing, it is real. As a sociologists/anthropologist I know that there are human cultures that do treat dreams as having the same reality as waking experience, and in those cultures, the entire family and village would be supportive of  her experiences, accepting them as valid. But in our culture, everyone is telling her that there are no people living in the battered metal shed in her back yard, no people coming into her house and changing the heater settings, no people coming in and taking photos of her in bed and making movies out of them. She is hurt and angry and sees a conspiracy against her because she says "I know what I see!" And believes that everyone else, the neighbors, her care takers, her son, who all tell her that there is no one there, are in a conspiracy against her.

So I remind myself that she was not happy at home and had not been happy for a long time, when she complains pitifully about how "awful" the care home is, and how the owner of the home doesn't want her there and doesn't want the care workers to do anything for her, and that the workers will get in big trouble because they gave her a shower today. Which she loved, but since she loved it, she won't ever get another one.

Bulletins from the Land of Dementia

A couple of days ago in our regular nightly telephone conversation my mother, made a passing comment about the sheets on her bed. She said that they were strange sheets, not her "real" sheets, and did I know where her real sheets might be. Since I have not been in her house for more than two years, and much has been rearranged by my brother and her daily home health care worker Jennifer, I told her that I did not know where her sheets were kept.

I know, from talking to Jennifer and my brother, that there have not been any changes in mother's bedding (other than regular washing)so I thought it was peculiar that she suddenly decided that the sheets on her bed were different and not her "real" sheets.

Today, I got more insight into what was going on. She told me that she had been (with the help of Jennifer) looking through all the closets, drawers, and chests looking for the "real" sheets, because (and here's where it gets strange) the sheets on her bed were slipping into her mind and giving her strange and bad dreams.

She "knows" that it has to be the sheets, after all she says, the sheets are "strange" and not the "real" sheets, so they must be pushing themselves into her mind when she is sleeping and causing the bad dreams.

Sad, yet weirdly humorous.

bulletins from the land of dementia

In many ways my mother seems to have regressed cognitively to her youth. She has lost decades of knowledge and understanding and reverted to ways of thinking that she deliberately chose to leave behind.

Today she was speaking of neighbors down the street, of a "different religion, not like us." Forgetting that I, her daughter, am "not like" her. Yet it is my mother who made me the person I am. It was her expression of religious doubt, her questions posed in my child's ear, her failure to blind acceptance of the religion in which she was raised, that made me the seeker that converted to Judaism.

My choice caused her some mild consternation at the time, but we talked it through and she was always supportive. Each spring she would mail me a care package of kosher for passover treats and boxes of Matzoh unavailable in the wilds of eastern Kentucky.

I accepted easily that her decline in the last few years meant she would no longer be sending me care packages (indeed now I'm the one sending stuff her way). But it did not occur to me until tonight's phone call, that she neither remembers nor understands the choice I made to be a Jew, why I made it, or what it means ("you mean you don't believe in Jesus at all?" she asked in bewilderment tonight); and that for her the hurt of my desertion is totally new and a fresh source of consternation.

humor from the land of dementia

This is so pitiful and yet funny, I wanted to share it.

My mother is cold all the time. A condition that most elderly people experience. Some of her problem is that she is unwilling to wear sufficient clothing to protect herself from the cold and drafts while she is indoors. She complains that warmer clothing is too heavy and the weight hurts her skin. In particular she shies away from anything around her neck and lower arms, and lower legs (she wears Capri length pants year round). The other contributing factor is that she has also forgotten how to work the thermostat, but cannot admit to anyone that she no longer understands how it works.

Unwilling to face and acknowledge that her own frailties are the cause of her lack of warmth she has devised a number of conspiratorial theories to account for why she is cold now, when she does not remember being cold in the past. My brother told me that one of her frequent complaints is that the utility company (Pacific Gas and Electric) "turns down the electricity and gas" at night so that the heater doesn't work as well as it should.

In our conversation yesterday, she revealed her new explanation - that the freezer stocked full of frozen food by my brother Charlie on his recent visit, is sucking away the power from the natural gas heater making it too cold in the house. She preceded this explanation by a phrase that I have come to dread: "I woke up in the middle of the night, and got to thinking about this problem I have with being cold all the time..." Every time my mother says that she "got to thinking about" anything it's usually trouble.

This particular explanation -- of the frozen foods draining away power from the heater -- she came up with had the virtue (in her mind) of placing the blame on my brother, whom she is very angry with at the moment. It has become necessary for him to take away more and more of her financial decision making power. She can no longer figure out money at all - she cannot interpret her bank statement, can no longer correctly write a check, confuses amounts of money (mistakes $4 for $400, and $4,000 for $40,000), no longer is able to make use of debit cards and credit cards without substantial assistance. At times is willing to acknowledge it to me, but views my brothers necessary steps to safe guard her financial security as an insult to her. "I'm not so poor as he thinks" she says frequently and angrily (meaning incompetent, not poverty struck).

It's other virtue, unfortunately, was that it was something she felt she could act upon without consulting others. So early in the morning, she carefully removed every single item of frozen food from the freezer, and stacked them in the garage. Hundreds of dollars of food that my brother had purchased to keep her fed over the next month.

For some reason, my mother felt the necessity of writing down information about each package that she removed. In telling me this story, she seemed to think that she would need this information when she talked to the utility company about her energy problems. The best I could tell is that she thought that some types of frozen food sucked up more power than others (??).

Luckily for everyone, it was not long before Jennifer (her wonderful health care worker) arrived. Jennifer patiently explained that the refrigerator used electricity, while the furnace used natural gas, so that there was no connection between the two things. It was clear in our conversation, that my mother does not believe this for a minute. But she was willing to accept that no one else would believe what was obvious to her, and she agreed to put all the food back in the freezer.

Once my mother gets an explanation lodged in her brain for something that puzzles her, it does not matter how many times people tell her differently, she will never let it go. For example, more than a year later, my mother is still convinced that the reason why "there's never anything good on TV any more" is because of that "darn box" she was forced to put on the TV. The "darn box" is of course the digital converter box that allows her to continue to get over the air broadcast television on her old analog set, and has nothing at all to do with the programming decisions of the stations she receives.