What, Me, Worry?

NOTE: This was written and scheduled to be posted prior to my sweet mother’s death.

While I was doing push-ups this morning I gave thanks over and over, as is my custom, to the two women who gifted me this precious day – my liver donor, whose life ended almost nine years ago, and my mother, who is gently moving toward her own final day. I have only the briefest information about the last days of my donor’s life, but I do know that she was cared for by her daughters, granddaughter, a home health aide and a hospital. I’ve been deeply involved with my mother’s care for the past four years, even though I live hundreds of miles away and my brother and a personal care aide provide the hands on care she needs for activities of daily living. All of this has made me very aware of how complex it can be to stay alive and live well right to the end.

Although Mike and I reside in a community with demographics that span the decades from newborn to ninety years and more, most of our friends are between 55 and 85. Several cope with ongoing chronic conditions (heart disease, leukemia, breast cancer, fibromyalgia) or “circumstances” resulting from past challenges, like my liver transplant or friends’ knee, hip, or shoulder surgeries – redundant reminders of our human vulnerability. In the past month alone one friend had such a massive heart incident that he had to be revitalized with a defibrillator and another, a fine gentleman who was re-elected to the Homeowners Association Board in June, was diagnosed with two advanced brain tumors. Day before yesterday a young woman (not yet 60), an active person who walks with our group daily, had an emergency appendectomy. Each of these occurred – boom – out of the blue.

So no matter whether you believe you are presently in excellent health, winning the battle against age, or you are already pro-actively thinking about your best options for taking care of yourself and loved ones as you continue the path into elderhood, I believe it makes sense to learn who the players are that you will likely need to interact with (if not rely on). Beginning with this post, I’m going to present information on how “the healthcare system” is currently organized, key terms, and the forces that are at play shaping and redirecting the resources that may or may not be available to baby boomers as we need them in the future.

Disclaimer: this is one woman’s research; it is neither all-encompassing, nor thoroughly/exhaustively fact-checked. If you have information to add, please do so. If you have information that corrects or refutes something I publish, bring it on. The best picture is a complete picture. One thing I’ve learned for sure from my experiences with my mother’s care is that while we’re all facing pretty much the same overall problems, there can never be a one-size-fits-all solution, because the unlimited nuances of each of our situations make that impossible. On the other hand, the perspective, previous experience, tips, referrals, supportive encouragement, empathy, and objective advice of a community of peers makes all the difference in reaching successful outcomes and maintaining one’s sanity in the process of caring for ourselves and others. I look forward to hearing from the chorus of our community of elders. (That means us, believe it or not, we are the elders, my friends.)

About Long Term and Post Acute Care – as explained by the Long Term and Post Acute Care (LTPAC) Health Information Technology Collaborative with annotations by yours truly.

“The traditional segmentation of the healthcare profession is made up of two major sectors: Acute Care (serious enough to require treatment in a facility such as a hospital for more than a few hours) and Ambulatory Care (arrive and leave in one day, on your own power). The emerging care models (based on our collective desire to employ best practices that deliver high quality treatment without redundancy, waste, or extended treatment) also encourage the care of an individual in the best care setting, at the right time, at the right acuity, and cost.

Over the next four years as more accountable care organizations (ACO’s are each made up of a set of health care providers—including primary care physicians, specialists, and hospitals—that work together collaboratively and accept collective accountability for the cost and quality of care delivered to a population of patients) and medical home models (a model or philosophy of primary care that is patient-centered, comprehensive, team-based, coordinated, accessible, and focused on quality and safety throughout a person’s life) are adopted there is a possibility of only one healthcare segment, the individual.” 

Based on recent reading, I have concluded that this emerging coordinated, person-centered care health system focused on wellness is taking shape because the much-maligned and thoroughly-challenged Affordable Healthcare Act (ACA) tracks reimbursements and incentives with the patient’s health and well-being rather than providers’ delivery of service. For example, under the ACA Medicare allows ACO’s to share incentive reimbursements that are tied to quality metrics (such as lowering the incidence of falls) and reductions in the total cost of care for an assigned population of patients (for example, lowering the number of times patients are readmitted to a hospital for repeat treatment of the same problem). Finally of a healthcare system that seeks to keep you vital and active by making all your records available to all your providers electronically, thus allowing generalists, hospitalists and specialists to work seamlessly together, and eliminating unnecessary “little sticks” for you at the lab. Say a fond farewell to our old healthcare system, paid according to how many days you stayed in the hospital, or the number of tests run/procedures delivered by each person/facility that laid hands on you.

“The following graphic illustrates the Long Term Post Acute Care (LTPAC) healthcare components. Even though hospitals actually provide acute healthcare services they are listed as a reference point” (because many elderly are discharged from hospitals into post acute or long term care after treatment for an acute illness and sometimes even a skilled nursing facility can’t handle the complexities of a patient’s care and must send their resident to a hospital setting.)


Each of the reference points above are further explained by selecting the corresponding link below.

Skilled Nursing Facility | Home Care and Hospice | Long Term Acute Care Hospital | Inpatient Rehabilitation Facility
Assisted Living Facility | Medication Management | PACE | Independent Care

For the sake of your understanding of what’s in store for us all, I encourage you to read the graphic both ways. First scenario: I might be living independently, then need home care in the form of someone who comes in once a week to sort my meds and see that I have food in the fridge. But when I can no longer shower or cook safely, or get in or out of bed safely, or dress myself, well then it may be advisable to live in a supervised/assisted setting (ALF). I might be able to extend my time living “independently” at home if I have family and a PACE program nearby, willing and able to meet my growing needs.

FYI – For the middle class, none of this is paid for by Medicare. If I met the stringent socio-economic eligibility requirements for Medicaid (which vary from state to state), and had someone to help me jump through the bureaucratic hoops, maybe I could get financial assistance. If I didn’t have a “knock-out” pre-existing condition, had the means and was proactive enough in mid-life to buy into and maintain the premiums on Long Term Care insurance, I might get help paying for home care for as long as the policy allowed after an initial elimination period during which I would pick up all the costs. Many LTC policies also offer a lump sum monthly cap for assisted living expenses, up to a lifetime policy limit, the rest is up to the patient. If and when I need skilled nursing (really only the most complex or challenged cases), the costs are split with Medicare paying for the medical costs, but room and board still falling to the patient/insurance policy. If I fall and break my hip, I might be transferred from “home” (the SNF) to an acute care facility (hospital). If I develop pneumonia there and am in imminent danger of death, they may have a hospice care ward or I may be transferred to a hospice facility, if available. (These transitions will all be decided upon by someone else as I will likely be too debilitated to make all the decisions and fill out all the forms. We’d like to think we can be our own advocate throughout life, but can we really?)

This is the path I believe most of us think of when considering the “normal” aging trajectory – home care, ALF, SNF, Hospice. But consider this second scenario: My friend’s mom, Ellen, in spite of being legally blind from macular degeneration and wheelchair bound due to other health problems, was living in New York City in a high-rise building devoted to independent senior living. She was 93. The facility offered social activities and an optional dining room for meals, should she choose not to eat in her apartment. Family helped: paying for private aides, purchasing and preparing meals, and chauffeuring her to specialty doctors other than those provided by the management. Then she began to suffer from advanced heart valve issues and COPD. She was admitted to a well-respected hospital for a successful valve replacement. The operation was a success, but she developed serious bed wounds while there and they  were made even worse by her follow-up stay in an understaffed/poorly trained inpatient rehab facility (the best of several limited options). In spite of heroic efforts by Ellen’s five adult children, by the time she was released she had accepted (no she demanded) home hospice as her preferred next step care choice. She died peacefully in her apartment within three weeks, surrounded by family.

My point is this; people plan, God laughs. We never know what the next moment will bring. I can’t control my fate, but I sure as heck want to sleep at night knowing I’ve put myself in the best situation to enjoy a soft landing. If you’ve read my memoir, Not Done Yet, you will recall I seem to have set myself up for success at that momentous crossroad. Partly by chance, partly through self-care, hard work, and spirituality. Partly due to the support of a great life partner and a network of caring friends. I may be holding on too hard to the Girl Scout motto: “Be Prepared,” but that’s why I’ve done all this research on senior well-being.

I remember in high school Driver’s Ed. they taught us the basics on how a car worked as well as how to drive and maintain it for safety’s sake. If you want to work the healthcare system in the future as you need it more and more, it’s a good idea to know the basics of how it is currently organized and the new bells and whistles the government and the marketplace are coming up with. And there are many other steps worth taking, some very pleasant, some more challenging, but in retirement every day is Saturday, so why not devote some of them to self-care?

More to follow. I’m not done yet.