A major role that many family caregivers will take on in eldercare is medical decision making, or at a minimum, guidance, coordination and advice on such decisions in coordination with an elder loved one.

The path of elder care is different for everyone, but often evolves and expands over time.  You may start to help an elderly parent with certain tasks or be asked to attend a doctor’s appointment or surgery consultation, or you may find yourself stepping in during a crisis.  Typically, over time, caregivers become more involved in the healthcare advocacy and medical decision making for a loved one.  If a loved one becomes incapacitated, this role may be handled solely by the family caregiver.

Making vital healthcare decisions can be extraordinarily stressful.  We all hear the stories in the news of families torn apart by such decisions.  Of course, every day families work together to make these decisions, both big and small.  Regardless, the decisions are a serious matter and one of the most stressful aspects of caregiving for many family members.

What steps can help make the healthcare decisions process smoother?

• Ensure your loved one has completed the necessary legal documents for advance care planning and decision making.  Such documents include: a healthcare power of attorney/healthcare surrogate, a living will, and a durable power of attorney.  Depending on your state and situations, the specific documents needed may vary and the language can be tailored.  Estate planning documents should also be included in this discussion, such as a will and/or trust.
• Understand the documents and ask questions.  This is a case where it should not all seem like a bunch of indecipherable “legalese” to you.  You need to understand how the documents work and clarify with questions if you are not sure.  You may need to refer back to your attorney to consult at the time the documents are used as well.  Family members sometimes run in to questions or problems when attempting to use the documents, so seek advice if need be.
• Review and update documents periodically.  If you have a major life change or wish to make a document change, don’t wait to contact your attorney to make the changes.  Additionally, it is a good idea to review the documents periodically.  In Florida, a new Durable Power of Attorney statute was passed that took effect October 1, 2011.  While older documents that were valid remain so, we recommend individuals talk to their attorney about updating to the new standards if possible.
• Get the information you feel you need from your medical providers to make an adequately informed decision.  Express your concerns and ask to consult further if you do not feel you have enough information.  Prepare questions ahead of time and take notes or work with a patient advocate to help you through the process.

An independent patient advocate can be a valuable resource as you go through the process of making various healthcare decisions on behalf of a loved one.  Here are just a few ways that a patient advocate can help you navigate elder care issues and decision-making:

• Assisting you in locating specialists and information on the particular disease or medical situation; helping you to set up appointments and locate resources.
• Helping you prepare for appointments (or attending on your behalf) to ensure you get answers to your questions and have the information needed to make the most informed healthcare decision.
• Talking through the decision and helping you process the information you have received.  These decisions can be very emotional and a third party can help you talk through your thoughts and concerns.  The patient advocate also helps you to feel you have the information and time needed to process the decision.  This may involve serving as a liaison with providers and determining what additional information is needed to make a decision.
• Care planning and coordination for your loved one.  Helping coordinate between providers and family members–keeping “everyone on the same page” as much as possible with the goal of ensuring quality care for your loved one.
• Mediating family discussions and serving as a neutral sounding board between family members who may be in disagreement.

Need help with this elder care issue?  Want to talk to someone about how to be better prepared for navigating elder care and helping to make medical decisions for a loved one?  Have a family crisis going on, family in disagreement?

Give us a call any time at 727-447-5845!

Elder Care and Elder Rage: Know the Warning Signs of Alzheimer’s

Advice and Perspective from Jacqueline Marcell, family caregiver and author of Elder Rage

Jacqueline Marcell is the author of Elder Rage, a book and website based on her caregiving experiences.  Here Aging Wisely shares some insights from Jacqueline as one of our special blog guests to hear her family caregiving perspective and some of the important advice she took away from the challenges she experienced while caring for her mother and father.

Aging Wisely: Give us a little background about your family caregiving experiences.

Jacqueline: For eleven years I pleaded with my obstinate elderly father to allow a caregiver to help him with my ailing mother, but after 55 years of loving each other he adamantly insisted on taking care of her himself. Every caregiver I hired to help him called in exasperation, “Jacqueline, I just can’t work with your father–his temper is impossible to handle. I don’t think he’ll accept help until he’s on his knees himself.”

My father had always been 90% great, but boy-oh-boy that temper was a doozy. He’d never turned on me before, but I’d never gone against his wishes either. When my mother nearly died from his inability to continue to care for her, I flew from southern California to San Francisco determined to save her life–having no idea that it would nearly cost me my own.

Tell us about the early stages of trying to get involved (and some of the early signs something more might be going wrong).

I spent three months in the hospital nursing my 82-pound mother back to relative health, while my father went from normal one minute to calling me nasty names and throwing me out of the house the next. I walked on egg shells trying not to upset him, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was heart wrenching to have my once-adoring father turn against me.

I immediately took my father to his doctor, only to be flabbergasted that he could act normal when he needed to. I could not believe it when the doctor looked at me as if I were lying. She didn’t even take me seriously when I reported my father had nearly electrocuted my mother, but fortunately I walked into the bathroom three seconds before he plugged in a huge power strip that was soaking in a tub of water–along with my mother’s feet! Much later, I was furious to find out my father had instructed his doctor (and everyone) not to listen to anything I said because I was just a (bleep) liar—and all I wanted was his money!

Then things got serious. My father had never laid a hand on me my whole life, but one day nearly choked me to death for adding HBO to his television, even though he had eagerly consented to it a few days before. Terrified, I call the police for the first time in my life who took him to a psychiatric hospital for evaluation. I could not believe it when they released him right away, saying they couldn’t find anything wrong with him. What is even more astonishing is that similar incidents occurred three more times.

Then you ran in to more problems…and what you call the “Caregiver Catch 22”?

After three months, I was finally able to bring my frail mother home from the hospital, but furious to find myself trapped. I couldn’t fly home and leave her alone with my father–she’d surely die from his inability to care for her. I couldn’t get my father to accept a caregiver, and even when I did—no one would put up with his temper very long. I couldn’t get healthcare professionals to help–my father was always so darling in front of them. I couldn’t get medication to calm him, and even when I finally did—he refused to take it and flushed it down the toilet. I couldn’t place my mother in a nursing home—he’d take her out. I couldn’t put him in a home—he didn’t qualify. They both refused Assisted Living—legally I couldn’t force them. I became a prisoner in my parents’ home for nearly a year trying to solve crisis after crisis, begging for professional help—and infuriated with a medical system that I didn’t feel was helping me appropriately.

When and how did you finally get some answers?

You don’t need a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat dementia properly. Finally, a friend suggested I call the Alzheimer’s Association who directed me to the best neurologist in the area who specialized in dementia. He performed a battery of blood, neurological, memory tests, CT and P.E.T. scans. After reviewing my parents’ many medications and ruling out numerous reversible dementias such as a B-12 and thyroid deficiency, you should have seen my face drop when he diagnosed Stage One Alzheimer’s in both parents—something all their other healthcare professionals missed entirely.

You learned a lot about some of the most challenging aspects of Alzheimer’s, especially in the early stages which can be particularly hard for family members.

What I’d been coping with was the beginning of Alzheimer’s (just one type of dementia), which begins very intermittently. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime and his habit of yelling to get his way was coming out over things that were irrational… at times. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated) and that he was still socially adjusted enough to never to show his ‘Hyde’ side to anyone outside the family. Even with the onset of dementia, it was astonishing he could be so manipulative. On the other hand, my mother was as sweet and lovely as she’d always been.

Share with our readers some of the important information  your learned about Alzheimer’s disease.

Alzheimer’s makes up 60-80% of all dementias.

There is not a cure and it is a progressive disease.  However, if identified early there are four FDA approved medications (Aricept, Exelon, Razadyne and Namenda) that mask symptoms, keeping the patient in the early independent stage longer, delaying the need for part to full-time care. The Alzheimer’s Association reports that with optimal lifestyle changes (proper nutrition, weight, exercise, socialization), a five year delay in the onset could save $50 BILLION in annual healthcare costs. Even a one month delay in nursing home placement of Alzheimer’s patients could save the U.S. $1 BILLION annually.

An expert in the brain chemistry can help find solutions that can make all the difference.  It sounds like this is what you experienced working closely with a neurologist?

After the neurologist worked on the Alzheimer’s treatments for my parents, he treated their depression which is often present in AD patients. It wasn’t easy to get the dosages right and it took time and patience — and no, my father wasn’t suddenly turned into an angel, but at least we didn’t need police intervention any longer!

What else were you able to do as a caregiver to stabilize the situation and make life more optimal for both you and your parents?

Once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluids, medication, treatments, exercise and socialization with much less resistance. I was also able to implement creative techniques to cope with the intermittent bizarre behaviors. Instead of logic and reason—I used distraction and redirection to things they were interested in. I learned to use reminiscence and talk about the old days, capitalizing on their long-term memories which were still quite good. Instead of arguing the facts—I agreed, validated frustrated feelings, and lived in their realities of the moment. I finally learned to just ‘go with the flow’ and let hurtful comments roll off.

And if none of that worked, a bribe of ice cream worked the best to cajole my father into the shower, even as he swore a blue streak at me that he’d just taken one yesterday (over a week ago). I was also finally able to get my father to accept a caregiver (he’d only alienated 40 that year—most only there for about ten minutes), and then with the benefit of Adult Day Care five days a week for my parents and a support group for me, everything finally started to fall into place.

Tell us about the financial side of things.

Before long my parents’ life savings was gone and we were well into mine. I was advised to apply for Medicaid and after months of evaluation they were approved for financial help from the government. I was so relieved, until I learned it would only pay to put my parents in a nursing home, not keep them at home with 24/7 care. And, since my mother needed more skilled care than my father, they’d be separated, something they would never consent to—nor did I want after all this work to keep them together.

I could not believe it—I finally had everything figured out medically, behaviorally, socially, legally, emotionally, caregivers in place, the house elder-proofed, and all I needed was financial help to keep them at home. If I’d only made sure my parents bought Long Term Care Insurance (or bought it for them) years ago while they were healthy before diagnosis of dementia, it could have covered the cost of their care at home. Instead, I paid for their care, which nearly wiped me out in every way. After five years of managing 24/7 care for my parents, I survived invasive breast cancer.

As we mentioned, it is an all too-common phenomena that dementia is overlooked.  You learned a tough lesson in this difficult process.

What is so unsettling is that not one healthcare professional discussed the possibility of the beginning of Alzheimer’s (or any type of dementia) in my parents with me that first year, which happens far too often. Alzheimer’s afflicts 5.4 million Americans, but millions go undiagnosed for years because intermittent subtle warning signs are chalked up to stress or a ‘normal’ part of aging. Since one out of eight by age 65, and nearly half by age 85 get AD, healthcare professionals of every specialty should know the ‘Ten Warning Signs of Alzheimer’s’ and educate their patients early so everyone can save time, money—and a fortune in Kleenex!

You can grab the warning signs of dementia and our memory loss fact sheet here.  Let’s all take a valuable lesson from the tough road Jacqueline faced and help spread the word and share awareness about the signs, symptoms and terminology related to dementia. 

We also encourage you to seek help from a geriatric care manager if you are struggling with caregiving issues, or even wondering if it is time to step in when you are feeling concerns about an aging parent.  We’re here to help at 727-447-5845 or click below to schedule a consultation, to begin getting answers to your questions, resources and more:

Jacqueline Marcell is an international speaker on Eldercare & Alzheimer’s, host of the COPING with CAREGIVING radio show, and author of the best-selling book, ELDER RAGE. You can learn more about Jacqueline and all the resources she offers at www.ElderRage.com.

Hospital readmissions are costly not only to Medicare but to the elders and families involved. 

Medicare is trying to recoup some of the approximately $17 billion per year in costs associated with readmissions.  Congress gave the Centers for Medicare and Medicaid Services the power under the Patient Protection and Affordable Care Act to cut hospitals’ pay by up to 1% if they exceed a certain 30-day readmission rate for patients with heart failure, heart attack or pneumonia, starting Oct. 1, 2012. 

The health reform law also set aside $500 million for a readmissions-reduction Medicare pilot program starting this year.  The program that has been created with this funding covers over 47 communities serving high risk beneficiaries across 21 states. It is part of a larger initiative by the Obama Administration called Partnership for Patients, developed to help improve the quality, safety, and affordability of health care.  The Partnership for Patients’ expected goals by 2013 include: • 40% reduction in hospital acquired conditions • 20% reduction in 30-day hospital readmissions • Up to $35 billion in cost savings in 3 years.

There is a lot of disagreement about just how many readmissions can be prevented, but there is agreement that things can be done to improve the system and reduce certain avoidable problems. According to Stephen Jencks, MD, MPH and lead author of a 2009 New England Journal of Medicine study on this issue, about 40% — nearly 1 million rehospitalizations annually — are avoidable.  In a June 2007 report, the Medicare Payment Advisory Commission said three-quarters of readmissions are “potentially preventable.”

Clearly, readmissions are costly to Medicare and carry a great personal cost to the elders and families directly involved.  While certain readmissions will be unavoidable, most experts agree that two simple areas make all the difference in reducing complications and related eldercare costs:

1. Instructions/communications to ensure understanding of post-discharge care
2. Follow-up care after the hospital stay to keep conditions under control (and coordination/set-up of this care)

We invite you to download a copy of our discharge planning checklist (and share!) as a means to help you and your family with ensuring you have all the instructions and information you need, and have asked necessary questions to ensure appropriate follow up care.

When an elder’s transition is not well-managed, problems often arise which may lead to more long-term needs and difficulty recuperating.  Difficulties during this time may lead to an overall decline in activities of daily living and nursing home placement, particularly for elders with multiple conditions or cognitive problems/memory loss.  Clearly, this can be a devastating turn of events for the elder and family, in addition to creating greater care needs and costs.

Hospitalization and discharge are critical times.  If you have a loved one who goes to the hospital, give us a call.  We know you will find it worthwhile to talk with Sue Talbott, our Senior Care Consultant, to get advice and options.  Here are a few of the questions we often get about how and why a geriatric care manager can help:

How does a geriatric care manager help with this process?  Why do I need to bring in an outside party to help?

Though you may have great medical providers and assistance from case managers at the hospital, an outside resource can help you and your medical team effectively navigate the transition.  First of all, this is a stressful time in which your time to make decisions may be very limited.  A care manager can save you a lot of time, stress and money immediately and in the long-term.  Care managers know the variety of resources in the community and can make specific recommendations.  Because care managers work in the community, with clients in all types of situations, we anticipate concerns to help you avoid them.

What about costs?

This is our area of expertise–so we have great efficiency in managing the process for you and working within your parameters. Most importantly, the planning involved helps you potentially avoid costly mistakes.  Care managers do not receive referral fees, so we are not being paid to recommend a certain facility or provider.  Our independent recommendations are tailored to what we think will work best for you, and our experience with providers’ quality of care.  We’re glad to talk with you about how we can help in your situation and budget guidelines.

Need help NOW?  Call us any time at 727-447-5845.

Medicare open enrollment is around the corner for Florida seniors and families around the country.  It is an important time to review your Medicare coverage and costs to decide if it is wise to make a change for 2013.

At Aging Wisely, we always keep you up-to-date on the latest news and information on Florida Medicare and eldercare.  We will be publishing our updated Medicare Fact Sheet for 2013 as soon as those costs are available.  In the meantime, Medicare has published the annual Medicare and You handbook and we wanted to share some of the most recent information with you.

We have done a number of presentations in our local community about Medicare and healthcare reform (The Affordable Care Act or “Obamacare”).  One of the major changes being touted is the addition of much more extensive preventative care benefits.  According to the Center for Medicare and Medicaid services, more than 32.5 million people have received one or more preventive service at no cost.

In addition, the Affordable Care Act made changes to the “donut hole” in Medicare’s prescription drug benefit (a confusing reimbursement system which left a gap in “the middle” of coverage for some recipients).  The donut hole will be gradually closing as part of the reform laws.  In 2011, recipients who hit the donut hole received a 50% discount on brand name drugs to help cover the costs.  About 3.6 million people received the discounts in 2011, a savings of about $600 per person.  The Medicare D donut hole will be phased out by 2020.

What will be new for 2013?

More preventative services will be covered, such as depression screenings, screenings and
counseling for alcohol misuse and obesity, and behavioral therapy for cardiovascular disease.

The donut hole will continue to shrink.  If recipients reach the coverage gap, they’ll pay only 47.5% for covered brand-name drugs and 79% for generics.

Co-pays and deductibles will be at least slightly different, typically with small increases each year.  We’ll publish those for you as soon as they are released!  Be aware that certain premiums are now income-adjusted so higher earners pay more.  Part B and Part D premiums are higher for anyone making over $85,000/year (or $170,000 as a couple).

On the provider side, incentive payments (and penalties) are being integrated in to the reimbursement system.  For example, Medicare Advantage Plans that receive high quality scores will receive bonuses (in addition to the fact that 5-star plans can enroll recipients at any time).  Also, hospitals are facing penalties for high readmissions rates as well as incentives for quality of care measures.

Many analysts are expecting significant changes to the Medicare advantage landscape due to the payment and program changes.  While 2013 may or may not bring significant changes, every year there are a number of plans that change or stop services, both in Medicare Advantage and Part D.

Need Florida Medicare advice?  Help evaluating your annual open enrollment choices or signing up for Medicare for the first time?  Our Medicare Analysis services are for you!  Contact us at 727-447-5845 to schedule an appointment or find out more.

The way Medicare pays hospitals changed starting on October 1, 2012.  As part of the Affordable Care Act (AKA Obamacare), two new programs are getting underway, Value Based Purchasing and Readmissions Reduction.  These programs aim to reward high-performing hospitals for quality care measures, while penalizing on high readmissions rates.

Here are just a few of the statistics that have been reported in a New England Journal of Medicine Study (2009) about hospital readmissions:

One in five elderly patients is readmitted to the hospital 30 days after leaving (approximately 2.3 million rehospitalizations/year).

Those rehospitalizations equal more than $17 billion in annual Medicare costs.

The lead author of that study estimated about 40% of these readmissions were “avoidable” and the Medicare Payment Advisory Board previously stated about 3/4 of all readmissions were potentially preventable.

The Readmissions Reduction program begins by penalizing hospitals with below-standard readmissions rates on some of the primary diagnoses for which these issues are common: heart failure, heart attack and pneumonia.  CMS (Centers for Medicare and Medicaid Services) will expand the list of diagnoses over time.  This will create a direct effect as Medicare will cut a low-performing hospital’s reimbursement.  Hospitals have been preparing for this change for some time and targeting geriatric case management and discharge planning for ways to reduce readmissions.

Here are some examples of what successful hospitals have implemented in geriatric case management and discharge planning improvements to reduce readmissions:

• Identifying high-risk patients for readmissions and helping to ensure follow up care (examples include setting up a follow-up appointment with the physician and doing a follow-up case management call to remind the patient of key items)
• Providing discharge tools such as simple instruction sheets and education or patient counseling
• Improving medication reconciliation
• Improving communications among medical providers

As these changes evolve, we will be bringing you more articles on hospitalization and the elderly as well as continuing to share many of our patient advocacy “insider tips” through our blog posts and newsletter.  You can always sign up to get our newest blog posts via email by just entering your email at the top of this page.

As an informed consumer, you may want to check out your local hospitals’ quality scores online.  Medicare offers a Hospital Compare tool (as well as other tools for home health and nursing homes), which is a good place to start.  There are a lot of different factors that go in to quality care and readmissions rates, however, so scores are just one guideline.  The best care for a specific condition may be at one hospital that does not provide the best care in another area.  Most importantly, families can be aware of these issues and vigilant in communicating and asking questions.  If you are a long-distance caregiver, the value of an onsite care manager is especially high as you try to navigate the system from a distance and set up necessary after-care.

As patient advocates, we applaud the efforts to reduce readmissions, though we understand that this is a complex problem with multiple causes and parties involved.  The hospitals can do things to improve, patients and families must take an active role, and after-care providers also play a vital role in continuity of care.

We know hospitalizations bring a lot of stress and sometimes you need someone to talk to about what is going on and what you can do.  It may be time to bring in one of our Aging Wisely patient advocates to ensure comprehensive geriatric case management for all of your loved one’s needs, or simply to get some advice to get past the crisis. 

Sue Talbott, our Senior Care Consultant, has over 20 years of experience working in local hospitals, rehabilitation centers and skilled nursing.  Sue can answer your questions and get you set up with our geriatric care management/patient advocacy or EasyLiving home health services to help in a transition.  She is here to help today–at 727-447-5845!