Stepping Out

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“Well, perhaps you need to step out there and make a fool of yourself.” Not the type of advice I would have expected from a mentor. Yet, that is what one of my mentors told me. I had enrolled in a certificate program at a nearby college after earning my master’s degree. I had begun to write poetry, yet had placed most of it in a desk drawer. I still wrote in notebooks, though, something I had been doing since childhood. But I didn’t see the writing as being central to my life. I knew I needed a steady job, one that paid a consistent wage.

 

I had grown up working class and Black in Brooklyn, New York, in the 50’s and 60’s. My father, trained as a carpenter, worked full time at a lumber exchange terminal in Greenpoint during the week and built bookshelves, cabinets, cabinets and various wood structures for relatives, neighbors, friends, friends of friends, and friends of relatives, friends of neighbors, etc. evenings after dinner and on weekends. My mother worked in the public high schools with students and their families to help prepare and support them in reaching the goal of college admission. With these role models and those of my friends’ parents, I couldn’t help but gravitate toward, and worry about finding a full time job post graduation.

 

I’d held two or more part time jobs as I worked my way through graduate school, and knew it was time to find more sustaining and sustainable work. The dean of my college was surprised when we first met. “You have two part time jobs? Most people struggle with just one job!” Well, most people were not African American New Yorkers raised by two southerners who had grown up poor during the Great Depression. I was not most people. I am still not most people. I’ve learned to face this about myself.

 

I’ve never quite fit in with the demographic that I supposedly belong to, which is more accurately, the one that I am often placed in by others. This demographic placement is, of course, based on my appearance. Growing up within my nuclear family this meant I needed to suppress some of my ideas, my true feelings and my opinions. In other words, if I wanted to respond honestly to some things, I had to hide those responses. No freedom there. That was what I learned to do to survive.

 

So, I grew into an angry young woman. Except that I didn’t know I was angry because I wasn’t allowed to express anger. So, I turned the anger in on myself and it stayed buried beneath the surface during my teens and most of my 20’s. An angry teen isn’t an unusual occurrence. A teen with buried anger probably isn’t unusual either. Around my parents and the other adults in my life, my anger was hidden so well, that it was also hidden from me. Perhaps it wasn’t only my independence that drew me to hang out with boys who became my closest friends in high school. They were comfortable with anger.

 

I had plenty of help with suppressing my anger from the patriarchal behavior that my family and community operated with. The anger was buried pretty deeply and I didn’t discover it until I participated in a workshop, which used strategies and exercises from acting to support people in recovering their self-esteem. I thought that I would never survive the time that I felt ready to explore anger. I don’t now remember the details of the strategy that I was taught and which I used for this exploration. What I do remember is how much lighter I felt once I had come out the other side of the tunnel. Let’s call it the anger tunnel, since that’s what it felt like. Somehow, I emerged from the other side a lot lighter and able to laugh. My fear of expressing the forbidden emotion had encouraged me to dance around the anger until I could no longer stand it. There was nothing left to do but dive into the anger tunnel. Looking back on this now, I see just how brave I was to walk away from the socialization I had experienced and recover more of myself.

 

I discovered that I was angry with myself for holding back, despite the fact that I had done so in order to survive. It has taken me years to appreciate my strong survival instincts, which I believe are due to the excellent genes I’ve inherited. My parents, grandparents and all of my greats could not afford to express their anger outwardly as their lives could have been snuffed out as a result of doing so. The social systems of Jim Crow and slavery guaranteed this fact.

 

So, this no longer angry young woman decided to leave a private sector job and return to school for an interdisciplinary degree that merged religion, psychology and philosophy. She did this in her late 20’s and she was happy reading, writing papers, reflecting on what I was reading and what I experienced and doing research. And in the mix of all of her scholarship, she began to write in verse. This was a complete surprise and a thoroughly new experience. But when I finished my program and I graduated, I stuffed the verse into a desk drawer. I didn’t take it seriously and I decided to return to school again. But this return turned out to be not a good fit. This led to the conversation with my mentor that began this essay. The conversation during which he said to me: “Well, perhaps you need to step out there and make a fool of yourself.”

 

Poetry allows me to do just that. I step out there and make a fool of myself. I have no idea where I will end up as I begin to write. I just follow the stream or words and return to it later to pull out the words, themes and sounds that ring for me, the ones that I am intrigued by or drawn to. There is a lot of revision and wondering about what I intend to say, where I am going with a line or a stanza. The sense of wonder is one that I revisit over and over again.

 

To be honest, writing prose also allows me to “step out there and make a fool of [myself],” too. It brings me back to the writing I once did as a book and film critic, curriculum developer and education research writer. Writing prose allows me to stretch out in a different way as a writer. It reminds me that I have some flexibility and range as a writer. And that is like taking a good yoga class or having a fun session at the gym.

 

Yes, I really do find going to the gym fun (but still need to do it more often). And most of all, I am buoyed, nurtured and fed by the practice of writing. I am going to reconsider and more accurately call this work that takes care of me, in ways that nothing else ever has, the discipline of writing. Writing requires discipline and it is a discipline. And I am grateful for it.

 

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The Tables Turned

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A few weeks ago, I sat riveted to a film about Alzheimer’s disease, caregivers, patients, and the human and financial cost of it all. Even though it was a Saturday evening and I had plans to go out, I could not move from my seat as the documentary film “Every Minute Counts” shared the stories of patients, families and the fate of elders with Alzheimer’s. I have something in common with the people in the film, as for nearly a decade; I cared for, advocated for and managed the care of my mother, who was an Alzheimer’s patient. My mom passed away last year.

For a portion of the film, Emergency Room staff at Massachusetts General Hospital were profiled and from them I learned a about a term and a practice called “granny dumping.” I was amazed that a term exists for the practice of literally dumping one’s elder relatives at the door of a hospital Emergency Room and leaving them there. A social worker shared that this happens often when family members, decide they need a vacation, become overwhelmed or don’t know what else to do with an Alzheimer’s patient. These people literally drive up to the door of the ER, leave the elder there, and then drive off. “Granny dumping” happens most often around the holidays. My guess is that the social worker meant the winter holidays.

The medical staff takes the person in and they end up being admitted to the hospital. The staff has the job of trying to find the family or making preparations for the care of the elder via placement if they cannot find the family. This kind of admission is called a “social admit” and is one that Medicare does not pay for; and it affects the hospital’s bottom line negatively. Social admits for people who have Alzheimer’s are also difficult because the patients cannot remember their medical history and also have short-term memory loss, so they can’t tell the staff what is wrong or what happened before they got to the hospital. They don’t know what brought them to the ER, they don’t know if they have other health conditions, they don’t know what meds they regularly take. The elders in the documentary film had Alzheimer’s disease and additional health complications. This is true of most Alzheimer’s patients and it adds to the complexity of treating them and caring for them.

Over the nine years that I cared for her, my mother made several visits to the ER. I was there with her, even if it meant staying at the hospital overnight and following her to her room when she had to be admitted. I was not a “granny dumper.” I was a single woman who moved my mother into my two-bedroom apartment and tried my best to figure out how to navigate the rocky and murky waters of her care, her changing health, and her quality of life when she was 81 years old. At the time, I was 53, single, and working multiple jobs in the field of education. And despite the overwhelming prospect of my mother’s changing personality due to a disease that does not stand still, I leapt into action and took on the most challenging job I have ever held in my life. It was a labor of love and one through which I had to constantly be reminded to take care of myself. At the same time I had to look out for the well being of my mother who was becoming more and more vulnerable and dependent on me every day. I had to mother my own mother. Alzheimer’s had turned the tables on us. The common saying in the community of those who work with Alzheimer’s patients and family members is “the disease does not stand still.”

A month prior to her arrival in my home, my brother had gone to collect mom after she almost burned her house down by leaving a pot on the stove, then going into the living room and falling asleep in her recliner. I returned home from work on my late shift evening, after driving home from San Jose, and retrieved a voicemail from one of mom’s neighbors, who asked me to call her. As Susan (not her real name) relayed the events of the evening, I felt sadness and worry. Apparently two of mom’s neighbors had to call the fire department because mom had locked the storm door to her home and the neighbors could not knock on the door or ring the bell. There was a lot of smoke in the house, but it turned out that mom was okay and nothing had burned but a pot on the stove. She was lucky that her neighbors were home and that they noticed.

After this happened, my brother moved mom several states north to the temporary housing provided by his new job, and the telephone check-ins between us began. He was upset that when he came home from work, he found that mom had left crumbs and food on the kitchen counter. He also didn’t know what to do about what seemed to be signs of incontinence. So, his girlfriend and I tag teamed to provide him with suggestions and solutions. I was doing all of this by phone from the other side of the country. His girlfriend was a few states away on the same coast as he and mom were. This lasted for a month or two.

My brother’s annual trip to a motorcycle race in Monterey, California turned into an opportunity for him to bring mom out west to stay with me for what we both agreed was awhile, while we tried to figure out what to do. I thought it was a good idea. It turned out to be an opportunity for me to research resources and find out what the possibilities might be for mom’s future, for my family’s future.

My brother agreed to research resources on the East Coast near his home.

In preparation for mom’s arrival, I called any local listing that mentioned the word Alzheimer’s and was fortunate enough to be connected with one of the social workers at a local adult day health center who was more than generous with information that provided me with a running start. Alzheimer’s Services of the East Bay or ASEB literally saved our lives. They referred me to Family Caregiver Alliance (FCA), based in San Francisco. This organization serves the entire Bay Area on the ground and also online, with fact sheets and information for families nationwide who are trying to figure out what to do about caring for a loved one who has become ill with Alzheimer’s, Parkinson’s and other diseases.

The family care team from FCA visited us at my home. They noted that the space was small for both of us. At the time, I didn’t understand what they meant, since two people in a two-bedroom apartment didn’t sound like it was a cramped living situation to me. So what the second bedroom was my home office and I’d given mom my bedroom and chosen to sleep on an air mattress on the living room floor? That was the way I thought about things only a few weeks into cohabitation with someone with dementia. This sleeping and living arrangement went on for 6 months. I hadn’t bargained for what would happen when mom began to sundown, or when she constantly repeated questions, became depressed on days that the senior day program was closed and asked questions about when she would be going back home, back to her home. It was heart breaking because even though I knew she was a lot safer living with me, I knew that the disease and her being uprooted had interrupted her life in a deep and fundamental way. There was no going back to the life she’d had as a retiree and widow. There was no going back to the independence she had enjoyed for most of her life. As a matter of fact, she was headed on a trajectory toward having less physical independence in ways that neither of us could predict the timing of. We didn’t know what the progression of Alzheimer’s would look like for her. We just knew that the disease did not stand still. It never does.

At the suggestion of the family care person from FCA, I signed mom up for an in depth evaluation at the U. C. Davis Alzheimer’s Research Center. The information we’d received from the nurse practitioner and staff in her hometown was good, but not as comprehensive as the information we could receive through a comprehensive evaluation. I placed her on the waiting list at UCSF Memory and Aging Center, as they not only evaluated patients, they also followed them as patients and assigned them to a neurologist and medical team. U. C Davis only evaluated patients. I was in for a bit of a surprise when we arrived at the U. C. Davis center. I thought I was signing mom up to be evaluated, but I didn’t realize that I was being evaluated too, not as a patient, but as a family member who was part of her ecosystem of care. They wanted to know what I had been observing and how long ago I, and my brother, had first noticed changes in mom’s behavior. This was difficult stuff to not only remember because of the emotional impact it carried, but also because of the detail it required to explain what had been going on over the past few years.

The evaluation was comprehensive and included a team of specialists that included psychologists, neurologists and others. Some parts of the evaluation included both of us together around a conference table with the team of researchers and medical professionals and other parts of the evaluation included me being questioned (evaluated, really) individually while mom was in another room being evaluated. One of the more humorous parts of this half-day of evaluation was when mom told the team that she had never had heart disease or surgery. Mom was so convincing that during my individual “talk” (evaluation) with the social psychologist, I was asked whether I was sure that mom had had heart surgery. “Does she have a scar?” “Yes” I replied. “Oh, she’s good” she replied and we both laughed.