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”.
Are we warehousing our people? Institutions have been banned long ago but there is a subtle, ever so gentle push to contain, manage and control citizens who have similarities. These similarities are not physical but based on a much more pervasive demographic. These citizens are our seniors, the disabled and low income of our community. Senior housing, section 8, HUD housing and accessible complexes lure citizens by offering amenities specific to their needs. All fine and good but makes you wonder why the American culture is so dead set on categorizing its citizens. This categorization starts at the funding source itself. The qualifying criteria of government programs demands a label.
I agree there are gated communities where people choose to live around their own peers of the same social status. That is fine and it is their choice. It is America and we are supposed to have freedom of choice. But here’s the disparity, the financially stable “choose” and the low income citizens “qualify”. Money should not be the benchmark of a person’s worth to society. Unfortunately it is the standard by which budgetary funding also rest on. It’s always about the money. It’s more expedient to build apartments that are all user-friendly to the occupants needs. I get that. Instead of ordering one roll-in shower component the contractor can order 100 and get a price break. It’s easier to build senior units all without step entry rather than a few at a regular apartment complex. But we are using this justification to place individuals and separate them like cattle into appropriate barns.
Why not separate young adults from middle age adults? Separate smart people from average people and so on. I’m not saying wanting to be around people like yourself is wrong by any means. What I’m trying to say is that not having a choice is wrong. We desperately need more integration and less isolation. The wealthy in America represent only around 10% of our population. That 10% can make any choices they desire while the 80% must qualify, if not now, usually by late adulthood.
If housing was built using universal design anyone could live anywhere. The cost for building would be the same regardless of the occupants needs. Some seniors prefer to live with neighbors their own age but some do not. The seniors I’ve interviewed feel its depressing and one step from the nursing home but have no other option. Many of the residents I spoke with who live in expensive retirement communities have moved back to individual residents complaining their autonomy was compromised by the cruise ship activity mentality at the big retirement complexes. At least their own financial security allowed them to make that choice. Categories may make it easier to finance and serve the people with disabilities, seniors and low income but it smacks in the face of American freedoms.
These labels can be very confusing if you are not familiar with the jargon of disability world. They are not only quite different but are not treated equal under the law. The definition of service animal was changed July 23, 2010 defining only dogs and miniature horses as a category for service animals. People are always surprised to see that miniature horses were approved as a service animal. While not common, they have earned a reputation as an alternative to traditional service dogs. They can be house broken, a requirement for service animals under the ADA and their life span of 30 years is a much longer working life span than dogs. Typically, people using dogs as service animals must find a new dog every 10 years as their service dog ages. For many reasons this can become an emotional trying experience. The miniature horse must be a docile, intelligent temperament even in the hectic urban environments just like the dogs are expected to be.
To be considered a service dog they are required to perform a “task” to qualify such as fetching a cell phone, opening or closing doors, taking garbage out, pull a wheel chair up an incline, etc. The task performed is based on the individual needs but they must perform one to qualify as a service dog.
Emotional support dogs assist people with mental impairments. They are not protected under the Americans with Disabilities Act. Needing glasses would be an impairment not able to see it all is the disability. This distinction is why a person using an emotional service dog is not protected under the ADA since the most important criteria is that the person has to have a disability according to the ADA definitions. However, there are provisions under the Fair Housing Act that allows them in HUD housing if proper paperwork is filed.
Psychiatric service dogs on the other hand can be taught to do tasks similar to mobility service dogs. Examples would be retrieving things dropped because on certain medication bending over would cause dizziness to the person, reminding or redirecting people with OCD to stop behaviors, alerting to smoke alarms, door bells, tornado warnings. They are a huge help for social phobias and much more so you can see how psychiatric service dogs would qualify because of the “task” they perform and the person’s status of disabled.
To clarify there is NO certification required by law. There are many organizations that are very good at training service dogs to accomplish tasks but it is not required. However keep in mind a service dog must act like a service dog. They should be socially trained to not only perform tasks but know their place in all situations so that’s the great benefit of the organization that knows their stuff and can instill that training in the service dog. An average training process for these dogs is typically 18 to 24 months, a huge investment of time and money.
If a service dog is not socially trained and barks and bites or growls or disturbs other people the business you are visiting can ask you to leave and not bring your dog in again and it would b their complete right to do so. These service animals’ open doors of freedom for people with disabilities that were once closed. They fill many roles such as companion, helper and unconditional love but they are also a tool when working and must follow regulations in order to have access to all the places a person wants to go. For more information visit the website http://www.swcil.org a nonprofit Center for Independent living and request an advocate to assist you with the current laws and compliance in your state. .
Diagnosis and prognosis are very different concepts based on different criteria. Diagnosis refers to identifying the nature or cause of the condition. Prognosis refers to the future of the condition based on previous case histories. People very often get these terms confused and link them together as a predetermined outcome of their injury or their illness. In other words, the prognosis is the likelihood of the person’s future with their condition based on other cases. It is a subjective not an objective conclusion but remember there are no two humans exactly alike physically, mentally, with beliefs or inner strength and ability. So really, how much credibility does that really give a prognosis?
In my long career as a disability advocate I’ve seen hundreds of people come for help as victims and helplessness because some doctor told them that they would never be able to do this or that and their future would be pretty bleak. Negative prognosis is more dangerous than the diagnosis itself because it fosters an attitude of giving up and giving in.
Why do doctors continue to make these negative diagnosis? I think there are two main reasons. One is that they are trained to look at facts based on previous outcomes and not to give patients “false hope” (how I hate those two words). Another reason is they are medically and scientifically trained and are not invested in transitioning their patients into the world after the hospital or diagnosis. In summary, they do not know the almost unlimited options living with disability.
They rely on a rehabilitation facility to do that but the rehabilitation staff is bound by doctor’s orders and his prognosis. Our whole medical system is based on specialists who are all under the control of the doctors. But guess who has the control over the doctors? You and only you. That’s right, you have the last say, you decide your own prognosis. You empower yourself by digging out the options, learning what is possible. You are a unique human with your own brand of determination and courage. Only you know what you’re capable of. Don’t let the medical field take away your self-determination by telling you what you can’t do.
The life journey is not about the destination but the process of every day and how you live that process is totally up to you. If you or someone you know needs a peer support or options in technology or just a place you can see people who have beat the odds and are living life on their own terms take a look at the website www.swcil.org it could possibly change your life. There is also a blog where you can ask questions and find resources.
The doctor’s role as an authority figure is very much deeply ingrained in the American culture. In addition, no one wants to be perceived as a difficult patient. It’s fine to follow your doctor’s orders if it is based on shared medical decision-making. However, when you’re in a room with a paper on the exam table crinkling under your bare bottom you may not feel so empowered. That being said, you cannot afford to be intimidated by your doctor and be a passive bystander. You need to keep focused on what is being ordered for tests and medications. Do not make rash decisions at that moment but rather go home and research it and look at other options if they are available. I would disregard those doctors who tell you everything on the Internet is incorrect. You must be careful when researching of course but there are very reliable nonprofit organizations that provide sound guidance like the Mayo Clinic and the Cleveland clinic. Dig for the facts and not someone’s recommendations because they had a similar medication or similar test. Ask a lot of questions, make sure you know the tests are justifiable and medications are not in conflict with what you are ready taking or the side effects that could be dangerous to your particular condition. We would not dream of buying a weed-eater let alone a car on someone’s recommendation without looking at facts and figures and comparisons first.
Be careful and be precise when you explain a symptom to your doctor. Many unnecessary x-rays, MRIs, and other procedures are commonly ordered because doctors do not want to be sued for not screening properly, for instance, if the patient has a heart attack or some other unknown known event after the appointment. Doctors are often paid a fee for these procedures and have a “better safe than sorry” justification. The same goes for referrals to specialists. They are invaluable in diagnosing a problem but need to be terminated when their expertise is no longer needed and a primary care physician can take over.
Make sure your communication is open with your doctor.
- Ask questions such as “what does that mean”? Most doctors just assume that you understand their medical terminology that they use every day. They are under incredible time pressure and if you do not bring a list of complaints to them you will probably get rushed out before you have all of your answers and concerns addressed.
- Don’t be afraid to tell your doctor that you’ve considered other hypotheses about your health based on your own observations.
- Avoid “on the way out the door” complaints. Those are things you suddenly remember like “oh and by the way I’m having pain in my back or trouble swallowing”. At that point the doctor can’t really do anything so they tell you to make another appointment or go to the emergency room. By then your 15 minute allotted appointment is up.
- Be honest when talking to your doctor about your out-of-pocket costs. Most people are shy about bringing up financial concerns even thinking they might get substandard care if they mention money is an object. But the fact is that in almost all cases physicians have good options available. They may know about free prescription drug samples or programs from the pharmaceutical companies that could pay for your medications.
Putting these suggestions in place may be difficult at first but it will empower you as a patient. After all it is your body and your life. Too many times miscommunication or lack of communication between patient and doctor ends up with serious consequences. There are no old-time general doctors anymore that know your family and have the time to sit down and have a conversation with you. The old practice of physicians using critical questioning to get a better knowledge of what’s really going on with the patient has been replaced by scheduling as many patients in 15 min. increments as possible. Never forget the medical field is a huge business and as such you are the customer. You are the profit and the loss on their financial sheet but that also gives you enormous power because without your insurance and money they would not exist as the huge corporation that they are. You are the customer, you are the product and you have a right to accept or decline medications, tests or procedures. If you have a doctor that is very uncomfortable with that you need to look around and find a doctor that became one for the right reason.
I have worked for a disability organization serving all disabilities for over 26 years. So many success stories through empowerment and knowledge but just as many failures because of the medical fields incessant need to stop the complaining and whining by over medicating. People come in ready to charge ahead and get their life back on track after a sudden disability or progressive illness diagnosis only to succumb to a zombie life after some minor ailment that the doctor prescribed drugs such as morphine or OxyContin. The next month they come in and you can hardly recognize them with their slurred speech and apathy attitude. They show you the additional six or seven pills they now needs treat the side effects. They don’t complain though because it feels so good. They start to look just like the people in nursing homes which is where their destination will be within a year when they can no longer make logical decisions and finally get hot lined by some “do gooder” case worker keeping them safe.
What was needed was intervention and a holistic approach. What you see before you is not always medical but the result of it.