It is so easy to judge the homeless and so easy to become one. I was there once and it was an almost impossible climb back up. I sit now in an in a nice little mobile home I bought myself to make sure fate doesn’t leave me homeless ever again. Retired after over 26 years of Disability Advocate work, I am reading an old journal of mine from 1988. It is astonishing where the journey takes you and the strength you find along the way. I’ve decided to share these musings in my life in hopes of empowering someone else to never give up. A year after this entry my life would change, becoming even more devastating, before I could start my uphill climb to a normal life.
Journal entry from 1988 –
Another summer almost gone. The seventh one actually and no permanent home before school starts. Another year in the 30-foot travel trailer, the box of tin on wheels as our friends call it.
There is never enough money saved to pay the deposit and first month’s rent on a house let alone utilities. We always come close to this dream but then a child needs shoes, the truck breaks down, someone gets an ear infection and the pot gives reluctantly until it looks more like gas money than homestead money.
So, we sit again in a campground on the southern coast of Mississippi where the heat and humidity turn you into one big sticky fly attraction while pretending to be just another snowbird vacationing for the winter. The job of managing the KOA campground pays slightly more than the lot rent but it’s better than nothing.
1988 and the pot we do have to piss in has a leaky holding tank again. It’s not that it’s all been bad. We finally upgraded this month to a fifth-wheel trailer that is only six years old and close quarters have forced us to bond in ways reminiscent of earlier American life.
But, on those sweltering, muggy nights when trying to sleep is the most oppressive thing you can do, I sit on the picnic table top under the awning and dream my dream of a home I once had. As tears crawl ever so slowly down my hot cheeks I realize how easy it was to become homeless and how hard it is to try and climb back up
Hell, I thought, what do I need a house for anyway as I pop the top off my Miller Lite. “Buck up, there are people worse off than you” I hear my Mothers voice echo in my ears as I light up my last cigarette in the pack. My heart opens momentary to store another sorrow. Maybe I’ll just sleep outside on the lounge chair tonight.
Anger days and sorrow nights — that is my life. If I just had lyrics I would be a great country song.
My Dad loved and I mean loved to travel and explore the states especially the lower coast-to-coast ones. Every school vacation off we would go. But don’t misunderstand this wasn’t a typical road trip. We moved. There was our 1953 light green Ford sedan, my dad’s 1949 Chevy pickup that pulled a 30 foot trailer with plywood sides and an army green canvas tarp pulled taught over everything we owned. Toward the end of school break we would settle in a house in one of the states from Florida to California.
My mom, sister, and two brothers and I traveled that route for many summers stopping at each attraction along the way and never missing the welcome rest stops in each state. We would read everything about the state’s history and all the attractions offered. My dad was a house painter so jobs were picked up everywhere along the journey. This was not a rich man’s vacation, not even close. But we survived and even had fun because of the roadside rest stops all along the highway. These were places you would finally get to go to the bathroom, run and play and eat your picnic lunch and ice cold cool-aide held in the big metal Coleman cooler. Dad more often than not took a little nap on the cool concrete picnic table bench covering his face with his hat or a newspaper and wake refreshed and ready to roll. My little brother and I would run, play checkers, jacks or anything else we found to entertain ourselves.
There was no worry that someone would rob you or you would get accosted in the restrooms or there would be drug deals in the parking lots. We were all travelers on a journey to different destinations. It was the place to get free water if your vehicle overheated or a helping hand from another traveler if you were broke down. You made friends for an hour or two knowing you would probably never see them again but you remember them in your stories along with the experiences and the sites that you encountered.
Now the rest stops are quietly disappearing. Budget cuts and people’s preference for fast food in place of picnics are causing these wonderful scenic places to fade away. Nowadays it’s about getting there fast as possible. Destination is the only goal. As the highway system expanded the off-ramps take you off the speeding interstate leading you directly to fast food and huge service stations. For years I did not notice that the road side rest stops were almost gone. Much like the phone booth and big blue neighborhood mailbox they just slid out of sight in the name of progress. But I have memories that weave into stories that come alive as I tell them to my grandchildren of the sights and sounds and smells and feel of the places we experienced that no book can match.
I’ve done a lot of contemplating this year about my life now that I’m retired. It’s been an undertaking and sometimes felt like I was walking on the edge of a tightrope in a raging storm. So, now I appreciate this kind of cruising you get to do as age creeps up on you. I’ve earned that for sure. Now, I sit back and watch my adult children walk and fall and stumble then dust themselves off again and carry on. I think most of them are at least looking for those speed bumps and slowing down a little while going over them.
Yes, I had exciting and interesting life experiences but not one moment of it did I not secretly yearn for stability. I so wanted the same home, the same man, getting ahead, belonging, it continued to allude me no matter how I tried to sneak up on it. And when I thought I caught it, I would find only dust in my hands. Many tears of despair and dangerous depression would be waiting at the door and I knew of only one way to scare it away and that was to allow anger to open it. It gritted it’s teeth and breathed fire leveling everything in its path. It took me and my little troop down roads where we “bucked up” to survive. And when the crisis simmered down we began the chase for contentment again.
I bargained, I gave in and almost gave up. I spoke affirmations, I stood my ground but again and again it slipped between the walls of illusion and reality.
I understand now why this had to be for experience has been the lantern I hold for others to see. Still, my face sometimes presses against those windowpanes of homes that have held the same families for generations. And, I wonder what it would have been like even though I did not choose it.
Then, for old times sake, I turn to take one more look of longing when I see a woman’s face pressed against that same windowpane, with that same look of longing, looking out at me.
My sister and I told our Mother we would never put her in a nursing home. That’s what we told her, my sister and me, without a thought about our own job commitments and physical limitations or the fact that Mom might eventually need 24-hour care with her Parkinson diagnosis advancing. Although our intentions were courageous there finally came a day that we had to break that promise even though we fought hard for every option we could scrape up.
So what were we so afraid of that a nursing home would be the very last option? The fears were many and unfortunately all too common. The primary ones were lack of quality care and compassion, neglect, bad food, loss of autonomy and deterioration of her mental health. Like almost all grown children faced with this decision we were somewhat optimistic at first, thinking if we looked hard enough we would be able to find that one nursing home that really cared, and, they would take Medicaid.
Even though I worked in the disability field at the time with experience to the contrary, my hopes were high. We carefully screened three or four skilled nursing facilities and included Mother in all the decision-making. By the time two months had passed we were transferring her into a third one. The nursing homes changed but the problems remained.
This process was wearing on Mother’s normally strong, courageous and happy attitude. I can tell you from experience that even the most aware and extrovert personalities will succumb to the daily chipping away of their self esteem until all that remains is the defeated complaining, and most important, complacent, victim. That is what happened to our Mother and in the end fear resided within her and she begged us not to “stir up” trouble as they make her pay for it later with neglect.
There are circumstances that I feel give way to a propensity for corruption of nursing home services. I have listed these below.
- A lot of registered nurses, because of inexperience or just plain “burn-out”, are unable to see past the documents they are required to complete to the true priorities in caring for their floor – safety, hydration, and attention to serious medical problems, adequate nutrition and cleanliness. Mainly for cost savings, nurse’s aides fill these important roles while the nurse does the exhausting paperwork. My Mother and many others on her floor seldom saw a nurse even though C-Diff infection continually ran rampant throughout the nursing home.
- Lack of supervisory staff especially on evening and all night shifts allows thievery and neglect and even abuse.
- Nursing aides and C.N.A.’s are hired and kept on minimum wages. They are not honored or valued for the compassionate work they do. This leaves an employee pool of mostly inexperienced, undereducated employees that are more often than not in desperate financial crisis. And, as anyone knows desperate people do desperate things.
- Lack of sensitivity training and communication skills leaves patients and their loved one frustrated and angry.
- Social Workers for the Nursing Homes are responsible for the entire population of residents. Almost always they have the education but no hands-on experience as well as no idea how to apply the social work “theories” so neatly addressed in text books to the overwhelming reality of old age. Once again, social workers directly out of school with no experience are less costly for the establishment.
- A kind of desensitizing effect happens as patients become room numbers and bed numbers. Being kind or socializing means you might become “attached” and then lose them.
I have been in a few decent nursing homes; however, they did not take Medicaid. And, in the nurse’s defense I think they probably started out caring and ended up in such a governmental paperwork cave-in that they just gave up trying. I really see the focus of the problem being how the money is allocated through reimbursements from both Medicaid and Medicare. Below I have included some ideas that I think would go a long way to solve at least some of the problems.
- Wage Pass-Through – I was reading about this on the Internet as a way to get the money directly to the people who do most of the work. A certain portion of public Medicaid monies can be passed on directly to nursing assistants. States could look at this policy instead of Medicaid monies going for overhead, misuse and profit first.
- Minimum staffing laws that are strictly enforced. Training and testing that a new employee must complete before starting. Review testing during six-month reviews.
- Allow residents to spend time with the facility’s dog or cat for emotional therapy of unconditional love. Non-Medicaid expensive nursing homes do this and it is very therapeutic. It’s a shame that the no-pet restriction is usually only for poor people.
- Nursing Home Workers Unions – this is done in some states and the quality of staff and treatment of patients has shown a rise in quality.
- Put in severe consequences when prosecuting corrupt nursing home corporations that defraud elderly Americans of huge amounts of money that should go to their care. Let this country take a stand – if you steal money intended for the care of our mothers and fathers, you will go to prison for a long time.
- All managers and supervisors read the study, “Quality in Long Term Care-What We Can Learn from Nursing Assistants”
- Take residents for walks or get a tandem bike for those who are able to ride one. But, most of all get them outside.
- Put their pictures on their doors (Younger ones too) and who they were, what they did. Some nursing homes are doing this now.
- Give nursing assistants a break. Congress should consider changing the Federal Tax Code to include, for example, something like, “If an individual is employed as a direct caregiver and earns fewer than 30K a year, one thousand dollar tax credit is available.
- Let residents vote on a different “employee of the month” and give that staff a small bonus or gift certificate or time off with pay
These are just some of the ideas I had. I am sure there are many more by frustrated loved ones like me. There has to be a better way than the current “waiting rooms” for death approach. At least now there is an option for aging in place with home care assistants like the programs from Independent Living Centers but still no funding for 24hr care.
My Mother did not have a dignified ending like my sister and I had longed for. She suffered for almost a year with C-Diff infection that half the nursing home had. It causes fever, diarrhea, vomiting and weakness. Mother had lost nearly half her weight from hardly eating and vomiting what she did get down. She sat in her recliner one evening ringing and calling for a staff that never came to help her to the bathroom. Sitting in her own urine all night was more than she could endure. She pushed herself up but before she could safely reach her bed just a foot away, she slipped in her own urine and broke her hip. A day later we were told about it when they decided to take her to the hospital. She had successful hip surgery but chose death anyway and refused food and water rather than life at the nursing home. Three days later she died. They called it “failure to thrive”.
Marriage was my first life changing transformation point. In the 60’s it was still considered the most accomplished thing a woman could hope for. It defined who you were. It was even thought of as a promotion of sorts. You got a new title, “wife” and a new last name. It meant someone wanted you, couldn’t live without you. You were, most of, all desirable.
The music and the movies of the day exalted the dumb blond, the light headed sex pot and the silly, giggly, and most important, helpless little girl. I was none of these but understood that in order to be “desirable” enough to snag a man into marriage I would need to play a part. Of the choices I could see I chose the demure good girl. At least it didn’t get me grounded. The very first line I threw out I snagged a boyfriend who would become my future husband. It didn’t occur to me then that I was capable of catching many more.
By what seemed to be no time at all, it was the eve of my wedding day. Although I had dated him for my entire high school years I was still apprehensive. It meant leaving my family home. Daddy would no longer be my sole male protector. What if my new husband couldn’t do that? I would change forever, more responsibility, less privacy. This was a big, big move from the 18 year old graduate into womanhood. But, I knew I had to take the leap, so I jumped self- doubt and all.
With my old all or nothing pattern of transformation throughout my life stages I was determined to be the best wife ever. I would keep my stomach flat, never look messed up, shine the floors and have sparkling bathrooms. And, of course, I expected the exact same devotion from him meaning he must focus on me and me alone. There was no room for anyone or anything to squeeze between me and him and my obsession to be the best. I resented the friends, extra activities, his work, obligations and on and on. My intensity and insecurity of transformation into a married woman was a suffocating reality that was bound to fail. And, of course three daughters and twelve years later it did.
Looking back, I think maybe I was really trying to cover up a little girl who wasn’t ready to make those changes but felt pushed along by society’s expectation to do so. I just kind of closed my eyes and ran for it as fast and as hard as possible lest I weep over what I had left behind. He was the basket that held all my eggs of happiness, joy and contentment. I loved my husband dearly but the insecurity within me produced an obsessiveness that drove us apart.
I raised my three daughters very differently. I made sure they were empowered as individuals full to the brim with self-importance. Today’s young women understand so much more of their worth and potential. Society has progressed beyond “equal” to a man to defining the individual regardless of the category of species. I know the feminist movement was necessary at the time but it spent a lot of time proving women were the same or better than men. In reality we are different, unique from men. We should not be in competition but honored for the diversity and unparalleled gifts we bring as women. No need to compete because we already know our capabilities as the individuals we are. The chains of negative attitude against women can only be broken by the self- realization of each woman to acknowledge and honor their self-worth. To be successful the movement must start within.
Living inside an illness puts us, literally, into someone else’s hands. We lose our sense of autonomy and power. We are isolated, sealed into the private rooms of our own minds. We may be in pain but it is hard for those outside the illness to understand, even those extensively trained for such work.
Yet, despite the fact that no one understands we may still want someone to listen, to touch us, to remind us we are still part of the human race.
And, so it was for me. Even after endless painful turning of my body that had wasted to mostly skin and skeleton, I longed for physical touch. I wanted to know there was someone who would fight for my life. I became more afraid that no one might care than I did of dying. All my life my Mother had fought for me, had kept me safe. At even the hint of harm she threw open her wings of courage and fought the danger. But, she was not here and for the first time in my life I was starkly vulnerable and way too weak to fight for myself. No one left now in my isolated world, no one but God.
“I’m ready for the end”, I said silently to God.
“No”, he whispered to me, “you are ready for the beginning.”
And so, this vehicle that had failed me, that the doctors said had no hope of recovering from the severe damage the sickness had ravaged on it, began to heal itself. My vitals started to stabilize; my heart began to beat stronger and with balanced rhythm. My kidneys began to function and my ability to draw and push breath began triggering the ventilator alarm forcing them to start weaning me off of it. I was visibly awake and aware.
I was back, I knew it, and at that moment my cup runneth over with the desire to live again. The best part of my life lay before me in ways I could never imagine. Faith would take me there.
I don’t want to be normal. I don’t want to always fit in, cow down or blend in. But in the great diverse nation of America normal is what’s being insisted on in schools, workplaces and communities. So who decides what is normal? Normal is what the culture in a society says it is based on the majority consensus. Society’s influences plays a huge part. Where do most of these influences come from? Besides religious beliefs they primarily come from marketing and the media. Some of the most pervasive and influential ads come from the pharmaceutical companies. They make you reevaluate your physical and mental health by asking if you ever feel down, laugh too long, go to the bathroom too frequently or get a headache from stress. Then they show you the solution in the form of their pill or liquid that will bring you back to “normal”.
Of course if symptoms lasts for more than a month or so you probably should seek a doctor’s advice but if it’s just a reaction to a crisis or upset and lasts just a day or two you could probably just use coping skills. And, they are not the only marketing schemes meant to bring you the ability to fit in with society. Manufacturing industries, cosmetic companies and fine jewelry also promote a “keeping up with the Joneses” solution by purchasing their cutting edge products.
I have always questioned why things are the way they are, and it just concerns me what influences the society I live in to make the rules of conformity for “normal” because it influences city ordinances, government guidelines and even education. The criteria to access benefits in your community is based on what that society perceives your needs are according to their perception of normal.
Public schools try to be a little more flexible with things like clothing and hairstyles. But any individualism like tattoos, too many earrings, hair colors or anything else that they deem distracting to other “normal” students is forbidden. The workplace is worse because it is usually up to the management and their perceptions of normal as to the expectations of self-identity. Noncompliance could cost you your job.
Personally, I’m not comfortable with conflict and the stress it creates. I think most people feel this way and so we comply. Unless you are filthy rich, and eccentric, bucking the system of normal is too high of a risk and too easy to be ostracized. However, I believe we have more power than we know we do. The influence of marketing and media are based on profits. If they are pulling the strings of influence we have the ability to cut those strings. Not all marketing and media are negative though. Some ads can be very informative in ways that promote further research that otherwise would have been ignored. We can promote those marketing and media efforts and ignore or refuse to buy things that promise to fix us so that we “fit in”. We can live by example and become the individual accepting diversity and even promote it. We can produce a consumer demand from that more diverse culture. We have always had the power over big business but sometimes it can be too easy to be lulled by their persuasive melody.
My earliest memory of Daddy is watching him plow furrows in our field with an old gray mule named Jack. Jack was not fond of his work and was soon replaced with a little red tractor with huge wheels on the back and a tall metal pipe that puffed smoke as it meandered its way up and down the pasture. I would play happily with my animals while watching his huge tall frame bounce up and down on the metal seat in rhythm with the rumble of the motor.Then the day would come to plant. Everyone in the family helped. I loved this part even though I was always getting scolded for putting too many seeds in one place. It amazed me when the little seedlings began to sprout above the ground. I could always tell exactly which ones were mine.
The afternoons were another favorite time for me. That was when Daddy fed all the animals. As I heard the old wooden screen door squeak, I knew he would be coming down the steps to find me. “Come on Sugar, let’s feed the chickens,”He would say. He would grab the heavy burlap sack like it was a bag of feathers and pour cracked corn into the old gray pail. I would run to open the wooden gate that led to the chicken house and we would holler, “here chick, chick.” The chickens would come running at break neck speed tumbling over each other in order to get there ahead of the rest. Next were the rabbits with their little brown pellet food, then the cats, dogs and finally the pigs. They took longer because he would first cook the pig slop in a huge galvanized wash tub over an open fire. I was never sure what all he put in that big tub except some ingredients I recognized from suppers we had eaten and a lot of corncobs. It smelled pretty good to me so I could understand why the pigs shoved and squealed as he poured the mixture into the long wooden trough.
Daddy and I had a love of animals in common and he let me have all sorts of orphans he would find on the road including five dogs, a dozen or so rabbits and more than a few cats that had kittens faster than the rabbits had bunnies. He taught me how to love them and to honor them as gifts of wonder.
When I was six we left the farm and moved to California. Daddy was one of the union painters that painted Disneyland castle as it was being built. When the job was finished we returned to Mississippi where Daddy worked at what he loved best, hunting and fishing. I would squat down beside him to discuss all kinds of puzzlement’s in my world, which were many, and he would answer each one as he shucked oysters, throwing the meat in a large white bucket and the shells in a pile that looked like a mountain. The fish odor was pungent in the humid air but I didn’t care as long as I got to ask my questions. When he finished he would ice down the buckets and take them to the fish market.
Sometimes I would get to go to the ocean with him to go “floundering”, as he called it. I would walk slowly beside him in the tide pools carrying the old green kerosene lantern barely above the water as he spotted the flounder and stabbed them with the razor sharp gig. “Don’t kick the sand now Sugar,” he would remind me. I learned the relationship of the moon and tides and what nights were best for fishing. There were always wonders to behold on these “flounder nights” like jellyfish, man-o-war, alligator gars washed up on shore, crabs with their beautiful orange and blue colors and all sizes of starfish. We would fish until almost midnight or until Daddy had enough to take to market the next day.
As the evenings grew cool and the leaves starting falling and tumbling down the roads, fishing season was over. The hunting and trapping season would begin. That was the time we would discuss the squirrels preparing for the winter and watch the summer birds fly in formations heading further south or west. Daddy had a sack of wild birdseed for those who braved the winter and a sack of waste corn for the squirrels that he affectionately called “tree rats”. The over-hang on the back porch would be full of hanging mink pelts on little surf boards made of wood, drying out in preparation to sell to Sears and Roebuck. Every evening he would oil the traps and check them out using a stick to see if they closed correctly. They would snap together with a loud clank that never failed to make me jump. He only trapped what he could sell. It was a balance of man and nature that he honored.
Within a year the onslaught of commercial fishermen and large mink farms forced Daddy out of business forever. He decided it was time to work at house painting full time. He was a perfectionist in anything he created and painting was no different. It made him very respected among customers allowing him to work steady from referrals. The next few summers we traveled back and forth from Florida to California finally settling in Phoenix, Arizona.
Arizona took some getting used to for all of us but soon Daddy had found the best places to enjoy his loves, fishing and hunting. He taught me how to shoot a rifle by the time I was twelve and started allowing me to go on the deer and turkey hunts if Mom went. But, I loved animals too much by then and killing them for any reason just wasn’t in me so I stopped going. However, I did enjoy the fishing trips even though I didn’t fish. It was a time I could be near him. He would always teach me something new just when I thought I knew it all. He would get in his little 17-foot fishing boat at dawn and return with his catch before the rest of us were even up.
When it got too hot to fish he took us for a ride around the lake and pointed out the animals and reptiles that inhabited the sheer canyon walls. He taught me the different varieties of cactus, mesquite trees and river oaks. It was with him that I saw my first cactus wren hovering over a lone cactus bloom. As the day closed he would make a big campfire and marvel at the wonders in the crystal clear night sky. He would point to the big and little dippers, the Milky Way and find falling stars. Right before turning in we would locate the moon and try to be the first to name the correct phase then find the North Star. Then it was off to sleep listening to the music of locust humming and the echo of coyotes howling. Nature was familiar to me; I had no fear of it. Daddy had taught me that.
As my teenage years crested on the horizon, nature began to change our relationship just as surely as it had brought us together. The Goddess started to sing its ancient melody in my Soul and I began to set different priorities like finding a life mate, which included all the prissiness and domestic skills that went with it. I was securely under my Mother’s wing now preparing to become a woman. Even though I loved Daddy dearly, we had different destines to follow.
When Daddy was 78 years old, he was diagnosed with Alzheimer’s and soon a Nursing Home became necessary to keep him safe. My heart broke for him and anger at the injustice of it all swelled up in my throat. When I visited him he saw me as the child I once was. I ached for him to see me as a woman and to play with his grandchildren. Then one day as I was sitting there watching him, something happened to me. My Ego got out of the way of my Soul and saw clearly that this was actually a gift, an encore, to a beautiful time we had shared. I began to appreciate this travel back in time and enjoyed many hours of conversation on nature and animals, fishing and hunting. We would walk outside by the tiny flower garden and watch the catbirds swoop down on an unaware cat or admire a flock of birds flying toward Mexico.
During the fall of 1981, the children and I moved to Illinois for a job opportunity for my husband. Although it hurt me deeply to leave Daddy, I told myself he would always be there and my Mom and brothers and sister would take good care of him. I promised myself that I would fly back next summer to spend time with him. By March I was back, not to watch the birds fly in from their winter homes but to hold his huge weather beaten hand while he lay in the stroke induced coma he had been in for days. I could barely withstand the deep sorrow I felt for this once strong and gentle man. When I was young I didn’t know he never had the opportunity to go past eighth grade, only that his wisdom was beyond compare and that he alone built the bridge that connected me forever to Mother Nature herself.
As I bent down to touch his cheek with a kiss, his eyes opened ever so slightly. Those familiar dark brown eyes gazed into mine and I heard him say, “Hello Sugar”, then he drifted back into his peaceful slumber never to awake again.
He is gone now but the afterglow of his light shines in me as I see the beauty of animals through his eyes and feel the mystical heartbeat of nature through his touch.