The Elder Care Reality Check

Going to See Your Parents Over the Holidays? Look, Listen, and Pause

Heading home for the holidays can stir up conflicting feelings. There’s the nostalgia of the old neighborhood, traditions to relive, the touchstones of memory. But when our parents reach a certain age, going home may also bring up sadness, worry, and apprehension:  Are they still okay? What will I do if they’re not?

The emotional burden of aging parents is spreading wider and getting heavier. According to a MetLife study published earlier this year, the share of adult children “providing personal care and/or financial assistance to a parent has more than tripled over the past 15 years. Currently, a quarter of adult children, mainly baby boomers, provide these types of care to a parent.” The aging of the U.S. population, including baby boomers themselves, means this is a trend that’s not going away soon.   

But it’s also true that the physical and/or mental decline of your parents is a touchy subject. The holidays are rarely the time for taking action if you see problems with the parents; they’ll likely tell you, perhaps loudly, that it’s none of your business how they’re doing—casting a pall over the holidays for everyone. But concern about how and when your parents might need your help is still a legitimate one. The best way to begin is to make your own quiet, but informed, assessment over the holidays. Three things to keep in mind: look, listen, and pause.

Look means looking for changes in your parents’ ability to carry out simple daily tasks, such as brushing their teeth, taking out the garbage, or putting away dishes. Do they do these tasks with more difficulty or less regularly? Is old food piling up in the refrigerator? Do they walk across a room freely, or are they touching furniture and walls to navigate? If so, they may be having balance problems. Observe how many medications your parents are taking and whether they are taking them in an organized way and according to directions. Medication mix-ups are an increasingly common cause of sudden changes in aging parents’ conditions, especially in this era of pervasive, nonstop medication marketing. Taking the wrong medication at the wrong time in the wrong dosage can lead to multiple problems that quickly snowball. When clients describe changes in a parent’s behavior, memory, speech patterns, or balance, our first suspect is a medication mix-up. Fortunately, when identified, the problem can be solved in a few days.  

Listen means truly listening to your parents as you converse—not interrogating them because you’re worried, or imposing your own expectations. Listen for vague phrases or clichés that signal acceptance or resignation and that are repeated regardless of topic—terms such as “you know, same as ever,” or “can’t complain, I guess.” Do they use these phrases when you ask about a specific activity such as grocery shopping? Can they tell you what a specific medication is for, and who prescribed it? Sometimes people with diminishing mental faculties use this verbal technique, called masking, to hide their increasing confusion. If they are confused, that’s a problem you need to know about—although again, the holidays aren’t the best time to confront  it.   

To drive or not to drive—that is the most frequently mentioned concern when adult children go home. If it is clear that a parent poses a driving danger you’ll want to deal with that situation without delay—but with a clear understanding that these are among the fiercest of intergenerational family battles. If you don’t want to be the bad guy who takes away the keys—someone is going to have to be—try to find third-party help: their doctor, a family friend, or even the DMV and local police.  

Pause means to give yourself a break and don’t panic if what you see at home alarms you. Resist being overwhelmed. Pause and have a serious talk with yourself or your spouse about the importance of being present, in the moment, and enjoying the holiday. Remind yourself that when you get home, you’ll begin to carve out a long-term plan, with your brothers and sisters. If the problems appear to be too many and too complex to handle yourself, consider seeking help from a reputable, experienced geriatric-care manager or consultant, who will bring objectivity and specialized knowledge into the picture. 

 

How Should I Start the Discussion with my Aging Parents About Planning for the Future?

It's best to be direct and straightforward. When the time comes, your parents will need you. The truth is that in order for you to act in the best interests of your parents when that time comes, you need to understand their preferences at many levels. Once you do, you will both feel more secure about the future, even if you don’t talk about it again. At some point, you will also need to have a working knowledge of your parents’ finances, health insurance coverage (usually Medicare), and health care issues.

Some issues you should know about:

First of all, do your parents want to live in their own home as long as possible? Or would they consider relocating to an assisted-living facility or to a more home-like environment, referred to as a board-and-care? Do you know the differences between the two? Is a nursing home an option? If not now, when does it come into play? If you don’t know the answers to these questions, a little bit of education would be good at this point.

What if they are not interested in relocating? What will it take for them to remain at home--safely? You’ll need to learn about in-home care services, how they work, how much they cost, how to choose a provider, why use an agency rather than a private individual, and many other related issues.

Is this beginning to sound complicated? That’s because it is. At Aging Solutions, we have a tool that could make it much easier. The Parent Profiler is an organizer that will help you collect important information about your parents now, information which you might need later but could be hard to get, especially if one of your parents is in the midst of a health crisis. The Parent Profiler guides you through all of the categories of information that you—and your brothers and sisters—should know. Some of my clients have brought a blank Parent Profiler to their parents and asked them to fill in the information. They then use this as an icebreaker for a serious discussion.

To get your free copy of Aging Solutions’ Parent Profiler, sign up to receive our blog postings via email. You can do so using the link at the top right of Aging Solutions’ home page (or at the top of this page if you're reading this post on the site). We’ll get the Parent Profiler to you within a week.

Next time we’ll talk about some ways to talk to your parents about your need to become better informed of their preferences while they age. 

 

Why Start 'That Conversation' with your Aging Parents?

Nobody looks forward to it, but beginning a discussion with your parents about how they want to live as they get older and more frail is something you can't avoid. Sure, it's the right thing to do but you can also consider it an investment in your own mental and physical well-being. Inevitably, your parents will grow older and will need help along the way; there is not yet a medication available to prevent the aging process—at least I haven't seen one advertised on TV lately. (And what would the side-effects be?)

So, you should consider being proactive, and get prepared to understand what you will be called upon to do  in order to best honor your parents' wishes for a safe and quality old age.

In my experience, many times the fear and dread about such a sensitive conversation is more overwhelming than the actual experience. However, in some cases, depending upon the family dynamics, perhaps the conversation shouldn't be so direct and honest, but rather gentle and indirect.

But first, let's talk about possible consequences if you let fear and discomfort take over, and make you decide against having that uncomfortable conversation. In many cases, the consequences of being unprepared turn out to be disastrous for both the aging parents and children.

Here's how one situation went in my practice (names have been changed):

Joe’s mom and dad, Rose and Mitchell, lived alone, were fiercely independent, and maintained a high-end lifestyle. Their nest egg was substantial, partly because they were very frugal—so frugal they weren’t about to spend $2,000 on some attorney to set up estate documents. They had a will in place and that was good enough. Moreover, they only had one son, so nobody would fight over their estate. They would be just fine.

Then, Mitchell had a massive stroke, was hospitalized, and then sent to a nursing home for rehabilitation. He would have to remain there unless Joe could find some money for in-home care, which can cost as much as $9,000 a month. Mitchell was unable to talk and therefore unable to express his wishes. The stroke was severe enough that his competency—his ability to make decisions at all—was questionable.

Although the Mitchell and Rose figured one of them could take care of the other, Rose had been battling severe rheumatoid arthritis for years, making her unable to physically help Mitchell if he were at home. Further, the stress of Mitchell’s illness took a severe toll. In fact, her doctors told Joe that she had dementia, undiagnosed until now. That explained why many of the couple’s bills had not been paid for several weeks.

So, Joe was in a really bad place. His parents had a will, which may have been good for when they died, but that did not help him since they were alive. Although they had funds to pay for good care, Joe had no way to access it.

Because of this, the only option left for Joe was filing for conservatorship of both his parents in the local probate court. There, Joe will likely spend tens of thousands of dollars and several months waiting for the court to grant him authority over his parents. If he himself doesn’t have the money, he cannot access their funds: he’ll wind up borrowing the money from his 401K and jeopardizing his own retirement. The impact on his own life was substantial: Joe struggled to find the time to drive Rose to the nursing home three times a week, after work, and between his own commitments to his wife and his kids’ sporting events.

What could he have done differently? Joe should have spent a little time talking to his parents or getting them to see an eldercare professional (who cost much less than an attorney). With their help, there could be a discussion about what documents the family should have in place so that Joe's parents could stay at home (or anywhere else) in the event of illness, and to make sure that Joe had the right tools to make that possible.

With both a durable power of attorney for finances and an advance health care directive in place, Joe would have simply had to identify bank accounts, locate checkbooks, and then take care of the bills as they came up monthly. The transition could have been made in a day or two as opposed to months of time and tens of thousands of dollars.

Next, we’ll talk about just how to have that all-important conversation.

 

Where Do We Start With Helping Our Mom?

 

So, the uncomfortable subject keeps coming up among you and your siblings about changes that you can all see with your mother. She is not quite like she used to be. You’ve all seen little things happening, but none of them have added up to a red flag you can't ignore--until recently.

Your mom has lost weight, doesn’t seem to be as sharp as before and often seems confused over the phone. One of your siblings has gone to check on her and found that she has little food in the house, and what is in the refrigerator is molded. The coffee maker had 2 inches of green fuzz in its filter and you can only pray that she hasn’t been drinking coffee from that every day since it was last checked a couple of weeks ago. 

Where do you start?

First, take a deep breath and try to remind yourself that you don’t have to do this alone. The sooner you start to talk about these things with your other family members, the sooner you can come up with some solutions. Once your family understands that to make good decisions you need to take a little time to learn about the options for your mom, you all can relax a bit.

What are those options?

First, understanding what you are dealing with, meaning medical or psychological/psychiatric conditions.

Second, knowing what your mom’s wishes are for her own care--remaining at home, going to an assisted living residence, or living with one of her children, to name the most common. It is best to be methodical about understanding parents’ needs and then working with them to make decisions. Know what the options are, how much they cost and try to thoroughly understand why one choice is being made over another. 

 
For example, your family may consider moving mom close to you because you live within 15 minutes’ drive. However, once you take a realistic look at your own life and your obligations to work, to children, and to the community, you may realize that your mom may rarely actually spend any time with you. However, if she moved closer to another sibling, perhaps one whose kids are away at college, your mom may be able to visit in person more and do some things, like eating out. If this option costs a little more, it would nevertheless benefit your mom much more. 

 
Almost inevitably, family dynamics are going to play a large part in your decisionmaking. Think about reaching out for help--it’s a difficult time and difficult decisions must be made. But it can also be a time of increased closeness and understanding within the family, because you know you are approaching the situation with the right intentions, and with a clear understanding of the steps to take.

 

Debt Ceiling Cuts May Cause a Problem for Seniors

The recent debt ceiling cuts are expected to hit doctors, hospitals, nursing homes, and home health care agencies. According to the latest information, there may be up to a 2% cut to service providers.The idea seems to be that the cuts will hit the providers as opposed to cutting out actual benefits to seniors. If your doctor decides to quit taking Medicare for insurance, what will you do?

Here are a couple of questions to ask your doctor: 

1. Will you be willing to keep me as a patient under Medicare if you quit taking new Medicare patients?

2. If you are thinking about cutting out all Medicare patients, how much notice will you give me?

You should also plan to write letters to the soon-to-be established bipartisan Congressional committee members. They are supposed to make even more cuts by Thanksgiving, and they may will impact Medicare consumers directly. Write and give them a piece of your mind.

Most federal employees have benefits other than Medicare, so they may not be quite as sympathetic as you may expec; they don't have to worry about it in the same way. Here's a graphic portrayal of this information gap, from the Kaiser Family Foundation: Reality for Seniors. 

A good site to help you keep up on things is The Kaiser Health News Daily Policy Report.

Speaking Up for Elder Abuse Victims and My Trip to Washington, D.C.

On June 15th, I was honored to be invited to speak about elder abuse issues along with several other notable speakers from around the nation, including Kathy Greenlee, assistant secretary for aging, U.S. Department of Health and Human Services; Joye Frost, acting director of the office for victims of crime, U.S. Department of Justice; Robert Blancato, national coordinator, Elder Justice Coalition; and Latifa Ring, founder, National Elder Abuse and Guardianship Victims Taskforce for Change. The bipartisan Congressional Victims' Rights Caucus hosted the event at the U.S. Capitol Visitors Center in honor of World Elder Abuse Awareness Day.

Congressman Poe (R-Texas), co-chair of the caucus, acknowledged the growing incidence of elder abuse and the importance of increasing awareness and responsiveness. The briefing examined how elder abuse is being addressed, its substantial cost and what steps need to be taken to more effectively prevent elder abuse and address the needs of elder abuse victims.

At a time in our world when many people are suffering from natural disasters, oppression by their own governments, painful poverty,threatened financial security and overall great uncertainty, I must commend Congressional Representatives Ted Poe (TX) and Jim Costa (CA) for formally and respectfully making such a special effort to keep Elder Abuse on our radar. It was clear by the completely filled room, that there is a lot of interest in ending elder abuse and that is very meaningful to those of us that spend our careers trying to make a difference in the lives of others.   

On Tuesday, June 14^th I participated in coordinating a listening session at the Rayburn Building where 30+ individuals spoke skillfully, truthfully and poignantly about their dreadful experiences within the probate courts around the nation. The theme that was consistent throughout all of their cases was that professionals (Attorney & Fiduciary types) are making millions while violating the rights of the most vulnerable, while the Judges condone these activities and that crimes are being committed without accountability. 

Their testimony was shocking and compelling and I was glad to be part of the effort to further expose the need for national attention to be brought to these tragic stories. People came from 17 different states to tell their stories and the session was well attended by legislative staffers. As a result, Rep. Poe is calling for national attention on this issue. Take a look at this article to get a sense of what was happening last week with this group. http://blog.chron.com/txpotomac/2011/06/rep-ted-poe-texas-advocates-urge-guardianship-reform-to-prevent-elder-abuse/.

For more information on the National Organization to End Guardianship Abuse: http://www.stopelderabuse.net/index.htm. Here is the link from the Office of Public Engagement, which talks about the perspective from the White House.http://www.whitehouse.gov/blog/2011/06/13/taking-stand-against-elder-abuse.

 

 

 

More of what seniors don't need

The New Old Age blog at the New York Times (subscription may be required) always has something useful to say, including today. They point to a new study that casts a long shadow over the usefulness of colon cancer screenings  for the elderly: 

"...(Of) more than 24,000 Medicare enrollees who had a negative colonoscopy from 2001 to 2003 — more than 46 percent underwent a repeat colonoscopy in less than seven years.... in almost a quarter of all these repeat colonoscopies — 23.5 percent — the researchers, scrutinizing the medical records, could find no reason for performing them so soon." 

We've always cautioned our clients and families about overmedication of their aging parents -- especially in the face of doctors' strong incentives to keep on doing so -- but excessive testing appears to be something new  to be on guard against. A colonoscopy is very stressful even for a non-senior, and there's a heartbreaking Comment after the blog about what happened to one elderly mother who underwent one. 

If some doctor orders a colonoscopy for one of your parents, don't be afraid to ask questions. Make sure there's a compelling reason for doing so and perhaps remind the doctor that, as the New Old Age points out

The United States Preventive Services Task Force recommends no routine colon cancer screening for those older than 75, and no screening at all for those over age 85. 

 

 

Over-medication of nursing home patients troubling -- Federal report

We've been seeing this trend for some time now among our own clients -- it's not just in nursing homes, either -- so it's heartening to see this official report and strongly worded commentary from the HHS inspector general. 

Excerpts:

"...most alarming, 88 percent of the time these [antipsychotic] drugs were prescribed for elderly patients with dementia, a population the FDA has warned faces an increased risk of death from this class of drugs."

"Family members of nursing home residents must ask questions about medications that their loved ones take, learning the reasons for their use, proper dosages and possible side effects."

It's worth printing the whole thing here. Thanks to California Watch for publicizing it. 

Overmedication of Nursing Home Patients Troubling

May 9, 2011
By Daniel R. Levinson, Inspector General, Department of Health and Human Services

With 46 million beneficiaries, any issue facing Medicare is a cause for concern.

A government report [PDF] this week has documented a problem regarding the use of antipsychotic drugs in nursing homes. Too many of these institutions fail to comply with federal regulations designed to prevent overmedication, giving nursing home patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use.

The report also found that these powerful, at times dangerous drugs were often prescribed for uses that are not approved by the Food and Drug Administration and do not qualify as medically accepted for Medicare coverage. Potentially most alarming, 88 percent of the time these drugs were prescribed for elderly patients with dementia, a population the FDA has warned faces an increased risk of death from this class of drugs.

Despite the fact that it is potentially lethal to prescribe antipsychotics to patients with dementia, there's ample evidence that some drug companies aggressively marketed their products towards such populations, putting profits before safety.

Government, taxpayers, nursing home residents, as well as their families and caregivers should be outraged - and seek solutions.

The Department of Health and Human Services initiated the report when a member of Congress questioned how many nursing home residents received a class of antipsychotic drugs introduced in the 1990s, among them risperidone and olanzapine. These drugs, known as "atypical" or "second generation" antipsychotics, replaced (at much higher cost) antipsychotic drugs introduced in the 1950s and 1960s to treat schizophrenia.

The FDA approves these and other drugs based on scientific proof of safety and effectiveness for specific uses. The agency also reviews scientific evidence to determine what warnings a drug must carry.

For atypical antipsychotics, the FDA imposes its strongest safety warning, often called a "black box warning," emphasizing an increased risk of death when used in elderly people with dementia. Physicians can use their medical judgment to prescribe drugs for uses unapproved by the FDA, including to patients for whom the boxed warning applies. Ideally, however, physicians who prescribe in such ways first determine that the benefits outweigh the risks.

The report also found:

• About 14 percent of nursing home residents, or nearly 305,000, had Medicare claims for these antipsychotic drugs.
• A little more than half of the antipsychotic drug claims for which Medicare paid should not have been covered because the claimed drugs were not used for medically accepted indications or not documented as provided to patients.
• For one in five residents, nursing homes dispensed these drugs in a way that violated the government's standards for their use. For example, the prescribed dose was too high or residents were on medication for too long.

Obviously, millions of taxpayer dollars are misspent if the Medicare program is paying for thousands of nursing home residents to get these drugs in violation of program requirements.

And although most physicians and nursing homes dispense antipsychotic drugs with the best interests of patients in mind, it is of great concern that so many nursing home residents are prescribed these drugs in the first place. The report didn't explore this issue, but a series of lawsuits and settlements that DHHS helped bring about suggest that many pharmaceutical companies have improperly promoted these drugs to doctors and nursing homes for many years.

For example, Eli Lilly pled guilty to criminal charges associated with illegally marketing its drug Zyprexa (olanzapine), including to doctors that treat elderly nursing home patients. Several other pharmaceutical companies -- Bristol-Meyers Squibb, Astra Zeneca and Pfizer -- settled government allegations that they improperly promoted their antipsychotic drugs for unapproved uses. Federal prosecution is pending against Johnson & Johnson for allegedly paying millions of dollars in kickbacks to induce Omnicare, the nation's largest long-term care pharmacy, to recommend the use of Risperdal in treating nursing home patients, many of whom had dementia.

The drug companies have paid billions to resolve these civil and criminal liabilities under federal health and safety laws. But money can't make up for years of corporate campaigns that market drugs with questionable benefits and potentially deadly side effects for vulnerable, elderly patients.

To solve this problem, everyone has a role to play.

Doctors should base prescribing decisions on their best medical judgments, weighing scientific evidence and an especially careful analysis when they are prescribing drugs for off-label use.

Nursing homes and pharmacies that serve the elderly should base drug-dispensing decisions on the best interest of the patient, not on improper influence of drug companies.

Family members of nursing home residents must ask questions about medications that their loved ones take, learning the reasons for their use, proper dosages and possible side effects.

Government must uphold patient safety standards established for nursing homes and combat off-label promotion of these powerful and potentially lethal drugs.

And drug companies should follow laws designed to protect patients and not promote drugs for unapproved uses -- or pay kickbacks to doctors and institutions to influence their prescribing.

As the huge Baby Boom generation ages, 10,000 Americans a day for the next 18 years will become newly eligible for Medicare. The future is challenging enough; we must not leave unaddressed the current, urgent problem of antipsychotic drug use among nursing home patients.

 

Take care in choosing a caregiver

Here's a link to a great story on San Francisco's KTVU recently, a special report on what can go wrong if a caregiver is not vetted properly. This is an extreme case, as TV stations are wont to feature. . But it's well-intentioned and points up a problem that is only going to grow as the population ages.

Our advice is to pick a good geriatric care manager first, who will know which are the good caregiver providers in your area, and which aren't.

But if you can't do that, at least find a caregiver agency that employs its workers--NOT one that uses them on a subcontractor basis. 

Republican Medicare plans not going over well at all

We try to be objective here at the Elder Care Reality Checke blog, but the leftish  Firelake blog has a good roundup today on town hall meetings that Republican congressman are holding during their Easter break. The Paul Ryan plan for changing Medicare does not seem to be impressing their constituents.

Here’s just a sampling. Rick Berg (R-ND):

“I would like to know: Did you vote to eliminate Medicare as it is today?” a man asks Berg during his library appearance in an exchange caught on video by PlainsDaily.com.

“No,” Berg says, before the audience contradicts him [...]

“I want you to tell me how much it’s going to cost us when we’re 65 years old after you give us a voucher,” [a woman] says.

“Fifty-five or over, absolutely no change, absolutely no change, in this Medicare program,” Berg promises.

“As long as you are over 55,” the woman responds. “If you’re 54, to hell with those people.”

(This is another sign that the exemption for seniors 55 and over is just not going over well with anyone.)

    Note the observation in the post pointing out a study showing Medicare Advantage plans cost more than regular Medicare.