When You Are Old and a Burden to Your Family

Wow, that’s a cold subject! But as we get older, specialized needs, chronic boredom, and intrusion into a family home with limited space… form the tip of the aging iceberg.  For many, there is no choice but to endure. In some cultures, extended families are designed to care for the elderly who can no longer care for themselves. At the other end of aging, some wind up pushing grocery cart or struggling in homeless encampments.

In a country where you live may not be where the rest of your family resides… indeed they could be scattered to the winds… the options are vastly complex. As we watch a Republican Congress drilling down to cut social care costs in order to pay for the tax cut to our wealthiest segment, we need to be aware exactly what we are facing – either for ourselves or for the oldest in our families unable to care for themselves – as those federal programs come under a hefty budget axe.

The biggest difficulties come from disability and disease deeply negatively impacting many of our most elderly citizens. There may be mobility issues – even getting up to go to the bathroom may be beyond the ability of those most impaired – degenerative diseases maximizing their toll, or fading mental abilities, either from simple aging or, more often, the rages of dementia or Alzheimer’s. Caring for those mental issues is a huge societal cost, in pain and money.

According the Alzheimers.net, only one in four people with that disease have been diagnosed. Annually, the United States spends upwards of $236 billion caring for those suffering with that disease. Here are the current expenditures from programs covering ALZ and other forms of dementia for seniors (over 65): Medicare $113 Billion, Medicaid $41 Billion, Out of pocket $44 Billion, Other $29 Billion. That Website provides some other not-so-pleasant realities about the disease.

·         1-in-9 Americans over 65 has Alzheimer’s disease. (Alzheimer’s Association)

·         When the first wave of baby boomers reaches age 85 (in 2031), it is projected that more than 3 million people age 85 and older will have Alzheimer’s. (Alzheimer’s Association)

·         One-third of Americans over age 85 are afflicted with the illness. (Alzheimer’s Association)

·         5.3 million Americans are living with Alzheimer’s disease. (Alzheimer’s Association)

·     Unless a cure is found, more than 16 million Americans will have the disease by 2050. (Alzheimer’s Association)

·         Alzheimer’s disease is the 6th leading cause of death in America. (Centers for Disease Control)

·         1-in-3 seniors die with Alzheimer’s or another kind of dementia. (Centers for Disease Control)

·         Typical life expectancy after an Alzheimer’s diagnosis is 4-to-8 years. (Alzheimer’s Association)

·         In 2016, the 85-years-and-older population includes about 2 million people with Alzheimer’s disease, or 40% of all people with Alzheimer’s age 65 and older. (Alzheimer’s Association)

But dementia and ALZ are not the only debilitating diseases that push people into managed care facilities… for those that can afford this often-demeaning luxury. Vision and hearing loss, crippling arthritis and other mobility disabilities, and slow degenerative diseases all take their toll. So assume somehow, with a little savings and maybe some long-term care insurance, you or an elderly relative are ready to face the cost of a retirement home – not that luxurious golf resort in your own condominium with available nursing care – but a place where the residents are likely to be left by their families… burdens. AARP tells us what we can expect, cost-wise:

“Brace yourself. Most people already know nursing home care can be expensive. Although the average cost is more than $50,000 a year and climbing, it can vary widely depending on where you live. Employee health insurance does not pay for nursing home care. About a third of nursing home residents pay all of their nursing home costs from their own funds. Extended nursing home care can eat up your or your loved one's savings quickly many people exhaust their finances after just six months. A fraction of them about 5 percent buys long-term care insurance, which covers the cost of a nursing home or other extended care. Medicare, the federal health insurance program for older persons and some younger ones with disabilities, pays for short-term nursing home stays.

“So what about the rest? The greatest share of residents, about two-thirds, pay for their care with money from Medicaid, a federal and state health insurance program for people with low incomes. Medicaid picks up the cost of nursing home care once people have used almost all of their savings spouses are allowed to keep some assets including income, savings, and their home. However, Medicaid will only pay for nursing home care that is provided at a facility certified by the government.

“Eligibility for Medicaid varies by state, so if you think a loved one may need care years from now, you should gather information as soon as possible. Learning early about the requirements ensures the care comes quickly when you or your loved one need it… As more people live longer and nursing home costs rise, so too does the urgency to deal with these issues.” And then there are the massive legal issues over competency and conservatorship, matters that are very important but beyond the scope of today’s blog.

Assume you find an “acceptable” facility, and costs vary profoundly depending on quality and location, what is life like? A few allow residents to bring furniture from their past lives – helpful to manage the transition – while others allow small pets, a hedge against the bitter pain of loneliness, feelings of abandonment and notion of being dumped off as they wait for death. Cruel? Yes, but we have to deal with aging one way or the other.

But as that “retirement home” or “assisted living” becomes more of a “nursing home,” the issues simply multiply. From klepto-staff, ready to lift a piece of jewelry or a nice jacket from the drawers and closets of those who “probably won’t know the difference” to downright elder abuse, there are issues that if we really knew what was happening should make our collective blood boil. Sanitation lapses also take their toll. Unfortunately, a vast number of such elder facilities are dark holes where complaints are not heard – assuming somebody is around and able to make them – and if heard, often effectively left uncorrected. Investigations can take a year or two to get started, often too little and too late for the victims.

While that sanitation issue might seem minor and easily fixed, the numbers say otherwise. Easily-spread infections are often exacerbated by ineffective staff and supervision. The December 27^th Los Angeles Times explains: “A Kaiser Health News analysis of four years of federal inspection records shows 74% of nursing homes have been cited for lapses in infection control — more than for any other type of health violation. In California, health inspectors have cited all but 133 of the state’s 1,251 homes.

“Although repeat citations are common, disciplinary action such as fines is rare: Nationwide, only 1 in 75 homes found deficient in those four years has received a high-level citation that can result in a financial penalty, the analysis found… ‘The facilities are getting the message that they don’t have to do anything,’ said Michael Connors of California Advocates for Nursing Home Reform, a nonprofit in San Francisco. ‘They’re giving them low-level warnings year after year after year, and the facilities have learned to ignore them.’

“Infections, many of which are avoidable, cause a quarter of the medical injuries Medicare beneficiaries experience in nursing homes, according to a federal report. They are among the most frequent reasons residents are sent back to the hospital. By one government estimate, healthcare-associated infections may result in as many as 380,000 deaths each year.

“The spread of methicillin-resistant Staphylococcus aureus (MRSA) and other antibiotic-resistant germs has become a major public health issue. Although Medicare has begun penalizing hospitals for high rates of certain infections, there has been no similar crackdown on nursing homes.

“As average hospital stays have shortened to 4.5 days in 2012 from 7.3 days in 1980, patients who a generation ago would have fully recuperated in hospitals now frequently end their recoveries in nursing homes. Weaker and thus more susceptible to infections, some need ventilators to help breathe and some have surgical wounds that are still healing, two conditions in which infections are more likely.

“‘You’ve got this influx of vulnerable patients but the staffing models are still geared more to the traditional long-stay resident,’ said Dr. Nimalie Stone, the Centers for Disease Control and Prevention’s medical epidemiologist for long-term care. ‘[That] kind of care is so much more complicated that facilities need to consider higher staffing.’

“The Centers for Medicare & Medicaid Services (CMS), which oversees inspections, has recognized that many nursing homes need to do more to combat contagious bugs. CMS last year required long-term-care facilities to put in place better systems to prevent infections, detect outbreaks early on and limit unnecessary use of antibiotics through a stewardship program.”

Basically, managed elder care takes planning, much of it financial, but much of it involving the elderly, when they are sufficiently aware to make choices, to participate in that planning. For those with relatives in such facilities, visiting with sufficient frequency is a top priority, even for folks who have lost their memories. It combats loneliness and serves as an additional check on the quality of the care involved. All I can say, when you are choosing a home for an elder relative, put yourself in their shoes…

I’m Peter Dekom, and if you think you will be a perfect healthy elder without a need for any kind of managed care, let’s just hope you are either very wealthy or guessed right.