This is the next journal entry after “Being Homeless” from August 1988. We are still in the KOA campground on the gulf coast of Mississippi. An opportunity has appeared that calls for some serious consideration. We have lived at the KOA for the last few years and it is the only place we found any semblance of stability. But, I do not fool myself into thinking we are not still homeless. I do not even suspect the life altering fate that awaits me.
Journal Entry – Aug 1988
Apprehension nags at the corner of my mind today. He has come back to visit the kids with news he has an opportunity to make some great money hauling tons of ice to the fish houses all along the coast. The main headquarters is in Destin, Florida and he describes beautiful beaches with white sands and emerald green water clear as a swimming pool. He says things will be different and so much fun to be had by the kids. Of course, I’ve heard the job promise before which is how we became sojourners hopping around following the next great offer.
Even though the apprehension won’t shut up I am considering because I am so desperate to leave this depressing place I am trapped in. I feel like a contained animal that just spotted a hole in the fence. I have no attachment to this place and won’t miss the stink from the slimy bayou that lingers under the dock, the green velvet mold that covers anything standing still more than an hour or the sweltering humidity that enters your body and lies there like an old heavy wet rug.
The kids are now excited and want to go and heaven knows they deserve some happiness. If the job falls through I’m pretty flexible and can work anywhere from secretarial to restaurant. So, although leery, I make the decision. But, I wonder what lies ahead? Will he come through this time? I guess if I get stuck at least it’s in a healthier environment. In two days we will be pulling into Destin, Florida with new hopes and dreams which have become dog eared from dragging them around.
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.
In 1989 my life changed forever. I did not realize yet, as I awoke from a coma, that I would never physically function the same again. I did regain walking with the help of adaptive aids but remained weak from nerve and muscle damage which remains. After I was home recovering I wrote the musings below but I have since learned hindsight is worthless except for beautiful memories. My life turned out to be wonderful with joy and successes I could have never imagined possible.
Every once in while I drag this prose out because it now makes me smile that I have come so far in my ability to appreciate life with no regrets.
If I would have known,
I would have ran one more time
I would have raced until the wind took my hair,
Until the landscape was but a blur
Until my muscles were used up with joy and exhaustion
My heart beat thundering in my ear
My skin glistening with sweat
My eyes burning from salt
I would have jumped with abandon
Every stump, every fence,
every moss covered rock
I would have hiked a lonely trail
And walked after dinner until sunset sent me home
If I had known,
I would have ran one more time.
“According to a recent survey”….blah, blah, blah. I’m so tired of hearing those words on the news, in commercials and in conversations. Stop eating that, don’t play this, drink more of this instead of that and on and on. I wonder who takes these surveys. Are they educated in the product or service they are giving their opinion on? The fact is survey data is usually biased because it depends on the subject’s motivation, honesty and expertise. Also important is the agenda of the survey designers to sway public opinion for or against a product or service. It’s known that if you can get as little as 10% of a social network to strongly commit to an opinion, that it is enough to rapidly convert the uncommitted 90% to adopt their point of view. This is called the “tipping point” after which the entire social network does the job of converting everyone else toward being a believer.
When the agenda is to “manage” and “control” people through fear or false promises then it becomes dangerous. The pharmaceutical industry, for one example, is guilty of “fear marketing” using survey data to scare potential customers into thinking they must take certain medications. Their data states they can prevent future conditions and better cure others than what they are taking now.
Then there are the food and drink scares. One year they warn not to eat butter, drink coffee or eat spicy foods. The next year butter is good and margarine is bad, caffeine is beneficial and spicy foods are good for circulation. All this based on stats, data and surveys. I would accept this data easier if the facts were listed and by who then I could draw my own conclusions.
Unfortunately the usual agenda is product marketing. It’s good to know what potential harm or options are available. But, when the general public are used as puppets and led like lemmings to the money pit it becomes manipulative. Next time you hear “a recent survey states” ask yourself where they are coming from and what are they trying to sell. If you see a competitor in the shadows who will go down if those 10% sway the 90% then you can make your own conclusions.
Anger As A Tool
Do you know what the most dangerous emotion is? It is depression. There is no way to use it. Like a car that has run out of fuel you can try to push it forward but you just can’t get anywhere. You can keep trying to crank the engine over but nothing ignites it. Soon you realize it is worthless as it is. What you need is fuel and that fuel for humans is anger.
I’m not talking about the anger that hurts other people as that is completely counterproductive. I’m talking about the anger you can use as a tool to fire up the engine of motivation that can get you down the road and on your way to success. We were not given the amazing range of emotions so they could control us but so we could use them to enhance our lives.
You know you are using anger to your advantage when you see it turn into will power, strength, endurance and determination. These are not passive feelings, they come from being fed up with apathy toward your environment or your own stagnate self. Anger is at the opposite end of the spectrum of victim.
Throughout my life I have experienced many crisis, divorces, betrayals, near death experience, coma, death of a grown child and a grandchild, homelessness and living with several disabilities and much more. But my life is a success because at each crisis I became stronger, smarter and more pro-active. The first divorce shattered me and the dark cloak of depression covered me until I felt I couldn’t breathe. Then one day I became angry at myself for letting a temporary speed bump jar me off my journey. I made plans and goals and got back on the road. I let anger fire my engine to move forward.
I’m certainly not perfect and every once in a while life deals me a new blow like my sweet granddaughter being diagnosed with leukemia at 14 and for a day or so I allow depression to seep in but the stress is never worth it. By now I know what is needed. I get fed up, I get angry at the situation and I reach for my blue steno pad and I make a plan, a PLAN B. I research, learn my options then go forward.
Can you imagine humanity without the emotion of anger? It motivates progress, competition and achievement. It is a tool that once mastered can push you forward to opportunities and goals beyond your expectations.
Where Did The Rest Stops Go?
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.
Saving the Environment to Save Ourselves
There are so many changes communities could do to be more pro-active in protecting their ecosystems. Some communities have started this process slowly. Everyone understands it should be a priority but getting the money to peruse it is always difficult. I began to do some research on what some options are and things a few cities are doing now. In examining large and mid-size urban cities I have located environmental areas that are at risk of becoming damaged beyond repair. These risk areas are biological habitats, clean air and water pollution. A city’s rapid growth and continuing urban sprawl is currently endangering indigenous plants and animals. However I feel with implementation of the recommendations I have found any city will see a substantial improvement on their ecosystem and a lighter footprint on the environment as a whole.
Regarding air quality – City buses and large construction equipment owned by the Department of Transportation need upgrading to newer engines or equipped with emission control devices such as idle reduction technology. Cross country locomotives going through communities can also be retrofitted to cut down on the mission pollution. This is a big concern since a major train yard often sits right in the middle of a highly populated area. Idling diesel engines not only omit harmful pollutants but waste fuel and cause engines to wear.
Promote transportation choices – Cars as transportation options are slow, dangerous and frustrating especially when you’re in the middle of a big city gridlock. They are also a huge user of oil. Taxpayers cover the load of road maintenance and constructions of new roads. Moving people by bus, train, bicycles or on foot is more efficient and kinder to the environment. These options are under used because communities are not actively diverting funds like the gas tax from road construction to Greenway construction. If it’s inconvenient most people will not use it. Working with your local park board to design and maintain a bicycle pedestrian trails that crisscrosses the city will encourage people to use them. It is also recommended that City Council consider a fund or pursue grants as a way to keep these trails and public transit terminals safe such as well lighted crosswalks and patrols coordinated by local police. City buses can be fitted with bike racks on the front so riders can take their bike in inclement weather. Employers could offer to pay for bus rides to work and create a more flexible schedule coinciding with the bus schedules. In Manila the Philippines, the Asian Bank is providing $300 million toward a ground breaking project that gives its people a lease to own E – trike. This kind of concept would be a great solution on a smaller scale for the various universities in your city. Parking is always an issue and with 1000+ students using cars it would make a huge difference in greenhouse gases.
Establishing green spaces and urban forestry – Urban forestry and green spaces should be developed and maintained wherever possible to promote a diverse and healthy environment. You could start a committee of interested residents to create an action plan for potential land preservation. They could also develop partnerships with local nonprofits who are engaged in land conservation like the local Park Board or conservation department. Green spaces are important to our health, mentally and ecologically. These green spaces could be intermingled with the Greenway bicycle and pedestrian trails to encourage people to use this as a form of transport.
Fuel-efficient cars – Everyone knows fuel-efficient cars get much better gas mileage but there are also other important environmental advantages such as releasing fewer emissions and carbon dioxide is cut in half. Electric cars are the most fuel-efficient. There are no tailpipes so no omissions can escape. Their motors convert 75% of the chemical energy from the batteries to power the wheels. You can compare that to conventional gasoline powered engines which produce only 20% of the energy stored in gasoline. Carpooling Promoting carpooling is another recommendation that could move your city toward a more eco-friendly community. Studies have shown that the average American car emits 23,600 pounds of CO2 a year. If four people shared rides in one car the emission savings would be three times that amount. The riders are also saving on gas, wear and tear on their car as well as maintenance. Encouraging large manufacturing companies to promote carpooling with their employees could help implement this system. They could offer incentives such as prime parking spaces.
These recommendations are good in theory but difficult to implement. Retrofitting and upgrading the city’s public transportation and heavy machinery will take additional funds or diverting funds from other necessary projects. Urban forestry and green spaces like creating bicycle pedestrian trails also take funds to complete and a lot a promotion to get community buy-in so they will be used. Carpooling has to work on many levels like similar work schedules, riders need to be compatible, the sacrifice of independence of doing errands on the way home and the number of riders needs to stay consistent. And promoting fuel-efficient cars would need funds for marketing plan to justify the initial cost which is more than traditional gas engines. In addition electric cars have no infrastructure built in to refuel electricity across the country yet. Nothing worth having is usually easy but in this case well worth the effort.
It will be a slow progress to turn the environment back to a safe and sustainable world but in the process we are saving ourselves. A look into 50 years from now could see big urban cities decaying from the inside out if a pro-active stance to save their ecosystems were never taken. We need to keep that in mind when voting for and supporting these positive changes. It’s our own humanity we are saving.
When Non-Profits Go Astray
What is a non-profit exactly? A nonprofit organization (NPO, also known as a non-business entity) is an organization that uses its surplus revenues to further achieve its purpose or mission, rather than distributing its surplus income to the organization’s directors as profit or dividends. They have a tax exempt status granted by the Internal Revenue Service after conditions are met such as purpose, limitations on spending and external safeguards.
The main purpose of a nonprofit is to serve the needs of the communities they have indicated in their application. They are not “agencies” or “businesses” they are private as opposed to governmental, self-governing, voluntary and of public benefit. In the United States there are three main economic sectors that serve the citizens “wants” and “needs”. These are the government, the for-profits and the nonprofits. For- profits supply our “wants” based on supply and demand. These profits are based on delivering those products and services to the consumer for a price. These are the community’s desires beyond their needs.
The non-profit is responsible for “needs” that the government does not have a direct responsibility to deliver. These needs and a goal to achieve them should be instilled in the mission statement. The problem that often raises its head is when the aggressive hunt for money wedges itself between the mission and the survival of the organization.
Nonprofits begin their noble causes no doubt with services and programs to fill those gaps of need but they must be ever diligent they do not get engulfed by their collaboration with the donor class to the extent it offers only token assistance to the people it serves causing it to smack against their mission. Once they demoralize that, you must ask why their doors remain open at all.
Not all nonprofits fall prey to the irresistible security money and power offer. However, those that do, make you wonder if the acquired wealth they accumulate is for the advancement of who they serve or who serves them.
Nearly all men can stand adversity,
but if you want to test a man’s character,
give him power. — Abraham Lincoln
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.
For My Mother
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”.