June went by in a blur of activity for GetHealthHelp. Here are some of the things that kept us busy.
A new puppy came into our 91 year old client’s life. She saw a picture of a Maltese who had inherited a million dollars in the paper. That very day, she called all over town to find out where she could get one. When I came to take her to the new pain doctor’s appointment, she said “Let’s forget the doctor today. I want this dog and I found out where to get one!” Well, I never tell someone who feels better and wants to do something fun, not to do it. So, out we went to bring this little bundle of joy home for the aides to take care of. I’ve had many puppies and I know it takes time to train them while your house gets turned upside down. The client had adopted one other puppy, which she gave up after a month to her maintenance man because the dog was “untrainable.” Now this one, the Maltese, wanted nothing but Love, Love, Love. Yet, after only two weeks, I had the call. “Get this dog out of here! He’s a danger. He’s bitten me and the aide and has a terrible mean streak!” I know when she gets something into her head there is no explaining it otherwise. So, that night I posted to Facebook that I needed help to find a loving home for a lively, untrained puppy. It’s really good to have ‘friends’. Within the hour I had several offers to take the dog. I really lucked out when Walter Ochoa of Right At Home in Brooklyn called to say that his mother in law had recently lost her Yorkie to cancer and was looking for a new dog. Not only did Walter come the next morning to remove the offending monster from my cowering client, but his training program on how to understand clients with dementia came into action as he was able to talk his way into my client’s heart. By the time he left, she had changed her mind about the prospects for the little demon and realized that maybe a puppy hadn’t been the best idea. Maybe an older dog that has been house broken and looking for love would be a better idea.
Thanks again Walter. You can see more about him at http://www.rightathome.net/brooklyn/difference/who-we-are/
An update on my last post about Community Medicaid: In June, I attended the Vincent Russo 25th Annual Elder Law Conference for Professionals. http://www.vjrussolaw.com/events/25th-annual-elder-law-conference-for-health-care-professionals/ Kelly Ann Murray, Esq. of the New York Legal Assistance Group gave a presentation showing the exact same kind of letter that my client received. It seems that Medicaid has some sort of computer glitch that is responsible for losing this year’s Community Medicaid applications. My client is back in the hospital because he didn’t get the help at home he needed. There’s also another glitch in the system. Since the Medicaid application had to be resubmitted, the patient had to continue to pay for his supplemental Medicare plan and his Part D coverage. According to his Drug Plan, he can only receive the prescriptions that keep him alive from the pharmacy in his neighborhood. He was ready for discharge from the hospital last week, only requiring to continue the antibiotic for the flu he contracted while overdoing it without an aide. But none of the Rehabilitation facilities could accept him because they couldn’t obtain the prescriptions he needs. Now, not only does he have the bill from his last rehab, he has to pay for private care to be able to come home without any sign of Medicaid services starting any time soon.
By Carol Marak
It’s disheartening to know that the Family and Medical Leave Act have not improved much over the years. Although no comprehensive policy or program to support family caregivers exists today, the pace of dialogue and interest has quickened in the past five years to include them in the deliveries of care. Many companies are expanding leave for maternity and paternity leave. NetFlix gives staff a year! However, moving the talk to action for family caregivers needs a shove.
It’s a universal issue, and I remember the days of helping mom and dad from a distance while holding down a full-time job. For me, family caregiving began in 1999, when mom’s health started to fail. At the time, 1,200 miles lay between us but decided to shorten the distance and moved closer.
Even so, my job kept us apart. My efforts to work a solution with the HR department fell on deaf ears. Back then, I thought she was cold-hearted but now know that her hands were tied. Unfortunately, the same grief rests on families today.
Lynn Friss, a senior strategic policy adviser for the AARP Public Policy Institute, says “Despite some recent policy advances at the federal and state levels, the pace of change must accelerate to recognize adequately and explicitly support caregiving families.” In Lynn’s article, she concludes that their requirements demand solutions, or they risk burnout from extended distress. Friss believes that working caregivers could prevent burnout by providing information, better care coordination, support, and training.
Our country must adapt to the complex needs of caregiving families. We must find ways to address and resolve the significant issues before we lose the “family assistance” to ill health caused by exhaustion. Since our country’s long-term services and supports (LTSS) systems are not set up to meet the needs of family caregivers, how do we help them?
We need real world answers and help. Therefore, I asked the Seniorcare.com Aging Council Members for their guidance. Since they work in the field and deal with families and older adults every day, no one is more suitable for the query,
“What emerging programs and policies do you see changing to include the family caregivers—and what remains a challenge?”
It is still a major problem for working caregivers to coordinate for a loved one’s needs, often leading to leaving jobs or cutting back on hours, giving up promotions, etc. We need to examine the cost-benefit as employers and society to paying for some assistance and offering various benefits versus losing valuable workers, time, etc. Alex Chamberlain, Easy Living FL.
Caregivers lose large chunks of wealth due to opportunity and actual costs of giving care. Companies are extending EAPs to help and modifying benefits to be more inclusive, but this needs to be addressed on a wider level as it not only impacts individuals but our overall economy. Shannon Martin, Aging Wisely.
If enacted, the Social Security Caregiving Act would provide modest retirement compensation to those who have left the workforce or reduced their hours to care for a loved one, thereby reducing the amount they are paying into Social Security. The credit would ensure the caregiver would not be losing the benefits they would receive upon retirement, presenting more flexibility for these caregivers. Evan Farr, Farr Law Firm.
One organization to check is ReAct, a coalition of companies that embrace family caregivers in the workplace. They have benchmark reports that provide best practices. Organizations must realize that great customer experience starts with a great employee experience and with 6 of 10 people in the workforce are family caregivers; taking care of them also helps your business. Anthony Cirillo, The Aging Experience.
Family caregivers are exhausted. Because many caregivers have to leave the workforce to care for aging family members, there are no additional monies left to pay for respite care. Caregivers who DO exit the workforce go without funds, friends and in many cases, the ability to find employment in their area of expertise. Shelley Webb, Transitional Caregiver.
In the realm of private insurance we talk of absenteeism and presenteeism (“there, but not there”) since forecasts call for a “caregiving workforce” as the new normal. Private LTCI– with all its attendant benefits– is expected to make a major push into the worksite in the next few years. In Washington, a trio of public policy advocates has called for greater support for family caregivers. Stephen Forman, CLTC, Long Term Care Associates, Inc.
Employer Options and Strategies
Flexible schedules in the workplace are a life saver for both the employer and employee. Not all positions/companies have the ability to make this work, Scot Cheben, Caregiving Answers. A Metlife study found that:
- 33% of working women decreased work hours
- 29% passed up a job promotion, training or assignment
- 22% took a leave of absence
- 20% switched from full-time to part-time employment
- 16% quit their jobs
Under FMLA, children of aging parents may take up to 12 weeks of unpaid leave annually to care for parents who are experiencing health problems. Unfortunately, many individuals do not meet the FMLA requirements, and even if they do, long-term care needs often exceed the allotted 12 weeks. Many people struggle due to the reduced or absent paychecks when taking leave under FMLA. Ben Mandelbaum, Senior-Planning.
America is waking up to the fact that family caregiving is costly and pain-FULL. A price tag exists for loss of work and increased healthcare costs for caregivers. Link that to the growing population and you have the perfect storm. Employers with EAPs reap “presenteeism”, cost-savings, and show support and value to employees. More can be done on state level to follow the federal FMLA. Change is driven by pocketbook pain: the government’s, the employer, or Insurance. Nancy Ruffner, NavigateNC.
About Carol Marak
Carol Marak is a senior and family caregiver advocate. She is the editor for SeniorCare.com and writes for many online publications offering information on current aging trends and help. She helped publish America has a Major Misconception on Aging, a report to help consumers plan for long-term care.
Carol Marak’s background includes caregiving for her parents and has first-hand experience in helping her father who lived with Alzheimer’s disease. She understands the dilemma family members encounter when caring for a relative and working a full-time job.
Ms. Marak has published more than 200 professional articles for health care websites, blogs and newsletters. She became a full-time freelancer in 2006 and has been interviewed by reporters.
Though senior care is her area of expertise and greatest passion, Carol has written and edited branded content, articles, company profiles and product brochures. Carol has a BS in Behavioral Sciences and Criminology from Sam Houston State University in Texas.
Today it’s a challenge to save for retirement and achieve financial goals. No matter what your level of wealth, estate planning is a significant portion of an individual’s overall financial plan. When you plan ahead, it gives greater control and a chance to leave more of your legacy to your family.Advertisement: Replay AdAds by ZINC
If you’re like most individuals, you might have trouble getting started with the “estate planning” process. But if you look at the planning process to be more than just writing a will, it will help organized assets and help your family avoid fighting over the estate. It may even help prevent the property from going to the government. Smart estate planning is complex, involving living wills, various trusts, and other legal documents. To help you get started with the planning, I asked the Seniorcare.com Aging Council for advice.
Sharing my personal experience and challenges about my family members’ estates and advance directives is the most efficient way to start the conversation. It illustrates that it’s a real issue. I try to de-stigmatize the topic by taking a matter-of-fact approach and providing practical tips, as I did in my book “Juggling Life, Work, and Caregiving. Amy Goyer, Amy Goyer Consultant.
- Ask: if they’ve had to make life altering decisions for one who is unable to make decisions himself? Who would so this for you; would he know how to based on your expressed wishes? It’s the greatest love letter written to one’s family. Don’t require your family to handle your affairs without any guidance. Let them know how to conclude the legacy story of your life. Rhonda Caudell, Endless Legacy.
- Use stories: When folks don’t know how to begin sharing a situation on TV or what happened to a neighbor/co-worker, that exposes vulnerability. It sets up the question that enables the conversation. Everyone loves a good plight-story: how others did it, or what they encountered. Tragedy or Triumph, we weigh them. Stories both teach and compel us to turn inward toward our planning. Nancy Ruffner, Navigate NC.
- Most consumers, don’t understand “The Modern Estate Plan” as the threshold for estate taxes is more than $10M for a couple. We need to explain better “property or estate erosion” due to potential healthcare costs which have no minimum threshold. Effectively, this stealth estate tax needs to be addressed, and most advisors fail to help clients understand the impact of healthcare in retirement and LTC planning. Mike Padawer, INERTIA Advisor Services.
- It’s important to educate clients about all the consequences if they neglect having an estate plan. A primary goal is to avoid probate court. Estate planning enables the client to consider who is most appropriate to handle medical and financial decisions should they become incapacitated. We also provide advice on techniques that can be used to benefit a client’s intended beneficiaries. Ron Webb, Peck Ritchey, LLC.
- Use TV shows, movies, articles in the paper and experiences of friends and relations to bring up the subject. Play the “what if” game–what if you were hit by a bus and broke your right arm and couldn’t write a check–how would your bills be paid? What if you were in a coma–what would you want me to do to care for you? Let’s all fill out our forms together. Donna Schempp, Family Caregiver Alliance.
- Let’s face it. Money and death are not the easiest discussions and deserves the greatest level of sensitivity. Depending upon the person, it may be simpler to provide a few books or resources to review. Other times, you can refer them to a specialist or send them documents to fill out directly. Sites like Rocketlawyer.com have updated materials to make it easier. Michelle Jeong at LifeAssist.
Use assessments and tools
- I use an assessment form that asks multiple choice questions. The answers tell me if a person is prepared, or needs assistance to make them or needs help from another person to make decisions for them. I deliver support via personal interviews, in family group settings, and in larger audiences. Caryn Isaacs, GetHealthHelp.com.
- I discuss EOL issues through The Conversation Project’s free tools. (www.theconversationproject.org) TCP’s Starter Kit is an easy, painless way to open the door about EOL. It is the step before setting up advance directives and thinking about medical interventions and talking with a lawyer. The approach makes you think about what is important to you at the end of life in broad terms. Laurie Miller, AppleCareandCompanion.
- It is part of our care management assessment process and ongoing work with every client. Community education is also important to create awareness and conversation. So far this year, our owner Elder Law Attorney Linda Chamberlain has talked about “Creating an Exit Strategy” and “The Legal Docs You Must Have” in monthly workshops. Shannon Martin, Aging Wisely
by Carol Marak
There is a geriatric population explosion in the United States, and policies for improving care and quality of life for the elderly have come to the forefront. Last year, Medicare modified payments to cover counseling sessions for providers and patients when discussing end-of-life issues. The topic is a sensitive one; having these discussions may lower health care spending. Since 25 percent of Medicare payments apply to the last year of life, these conversations could limit treatment. According to a 2010 Health Services Research study, 63 percent of beneficiaries receive hospital care in the last few months of life.
Public and private hospitals lack the services needed to educate patients regarding palliative care. The new Medicare ruling allows voluntary advance care planning during patients’ annual checkups. The provision aims to forego aggressive life-sustaining treatment and help beneficiaries deal with complex decisions when approaching death.
The National Institutes of Health notes that doctors are trained to maintain health and fight illness and, thus, receive insufficient guidance on how to communicate with dying patients. And since our society is death-averse, it is not surprising that physicians find it difficult to engage in “terminal state” consultations. For them, death is a medical failure. However, advocates of Medicare’s ruling recognize that good communication can dispel fears, minimize pain and suffering, and enable patients and their families to experience a peaceful death.
A few members of the SeniorCare.com Aging Council offer advice to initiate end-of-life conversations:
Scot Cheben, CareGivingAnswers.com, encourages doctors and patients to have ongoing group conversations that include a trained gerontologist or social worker.
Kathy Birkett, SeniorCareCorner.com, sees doctors ideally positioned to have an end-of-life dialogue. Doctors don’t have to know everything but need to get the process started and then help patients complete the journey.
Caryn Isaacs, GetHealthHelp.com, remembers a client who refused to change his “destructive” habits until he began dialysis. The patient thought one or two treatments would be the cure. The patient soon learned from his doctor that if he wanted to live longer, he would need to make substantial lifestyle changes. It led to advance directive discussions.
Evan Farr, FarrLawFirm.com, says that because physicians fight illness, they need practical educational tools to address fundamental issues concerning death and dying.
Connie Chow, DailyCaring.com, thinks Medicare support is a step in the right direction. An excellent book is Being Mortal: Medicine and What Matters in the End. Written by Atul Gawande, a surgeon and public health researcher, it illustrates doctors’ reluctance to stop treatment even in terminal cases and their avoidance of discussions about likely outcomes.
Carol Marak is the editor at SeniorCare.com. She earned a Certificate in the Fundamentals of Gerontology from the University of California, Davis. Contact Carol at Carol@SeniorCare.com.
I was quoted in this article:
Experts know that older adults rely on good health to remain independent and productive but by the measure of medical diagnoses, baby boomers are sicker than their predecessors. The NCOA confirms 92 percent of older adults over 65 live with one chronic condition, more than two-thirds (77 percent) have at least two, and about 15 percent have at least six long-term ailments. The sickest account for more than $324 billion spent on traditional Medicare.
Knowing the massive numbers of sick people, financing long-term care might be unsustainable. But why didn’t the conference tackle the problem of paying for long-term care since it’s the most unstable factor eating into our retirement security? A new federal brief found that half of Americans who reach age 65 will experience severe functional needs and will pay $138,000 out of pocket for care.
The White House has access to such figures — so, why was it missed?
But that wasn’t the only one. There were a lot overlooked. Topics like the future of aging, transforming nursing homes, dementia support, and tapping the vast knowledge of older adults — all ignored. And since expert panels who could give meaningful answers to the critical issues were not included, Seniorcare.com asked prominent aging leaders to share their perspectives of what SHOULD have been discussed:
In your experience of reading about (or participating in live webinars during) the White House Conference on Aging, name one aging opportunity the conference missed?
More focus placed on retirement security, prevention of elder financial exploitation including abuse, and long-term services and supports. Evan Farr, Farr Law Firm — Strengthening Social Security and finding ways to protect pensions and Medicare not covered nearly enough. Also, the agenda overlooks our diversified older population (including ethnic, non-white, and LGBT elders).
WHCOA missed creating solutions not just revealing problems for caregivers trying to meet needs of aging carees. Kathy Birkett, Senior Care Corner — Can we give tax incentives for adult caregivers working while caregiving? How can spouses pay for items not covered by Medicare-homecare, training, co-pay, dental care, hearing aids? It would also have been helpful to have a real forum for caregivers to voice their concerns during WHCOA.
The main complaint I hear from patients is not getting to see a doctor. Caryn Isaacs, Get Health Help — The change from doctors to Physician assistants and nurses doing doctors work, the changing role of the physician to a paper pusher. I asked this question at a conference and was told that the plan was to phase out doctors.
Caregiver health and well-being isn’t covered sufficiently and that mirrors society in general. Anthony Cirillo, The Aging Experience — Family caregivers in the workforce is another important issue that needs to be discussed. A recent report looking at hospital chief experience officers and their role found a glaring lack of initiatives and priorities focused on caregiver burnout.
Respite for caregivers. Nancy Wurtzel, Dating Dementia — I’d like to have heard more concrete details about how to provide respite for caregivers. Respite care is discussed, but the reality is that there are not enough free or affordable programs for those of advanced age or those living with Alzheimer’s. This has to change as we are facing a rapidly aging population and it will take people and money to make this happen.
A look at senior living community regulations and how they hinder/help could be beneficial. Michelle Seitzer, MichelleSeitzer.com — It seemed to be quite comprehensive in its scope. But perhaps a look at senior living community regulations and how they hinder/help could be beneficial, particularly as the new generation of senior living residents is already changing what these communities look like and what services they provide.
The opportunity to advance LGBT senior rights was one topic sorely overlooked. David Mordehi, Advise and Protect — Great strides were made this year in marriage equality laws; however, with Congress not funding the conference on aging in 2015, many believe the opportunity to advance LGBT senior rights was one topic sorely overlooked. Unless addressed, this populace of elders will continue to suffer discrimination when it comes to housing and healthcare.
The glaring need: to increase the frequency of the conference Nancy Ruffner, Navigate NC — It needs to rise in the frequency due to the swelling of our aging demographic and include more topics. Sure, we further engagement with watch parties and online access. We may even connect the consumer to visionary and to spur action. The rub for me and many is: one day, in 10 years time, and four topics?
Society’s stigma against aging and caregiving. Connie Chow, DailyCaring — Caregivers are isolated and feel alone in their struggles. How can they get support unless they can speak openly about their experiences and needs? Today, one in eight Americans are caregivers, so why isn’t caring for seniors discussed and supported like caring for children is?
Endorsing penalty-free and tax-free withdrawals from qualified accounts to pay for long-term care or LTC insurance. Stephen Forman, Long Term Care Associates, Inc. — This year’s WHCOA generated nearly 20 large-scale initiatives on topics ranging from aging-in-place to fall prevention. And while the White House took steps to encourage better retirement planning (via the 401(k), myRA and TSP programs), it stopped just short of that missed opportunity.
I met Martha Stevens when I was just starting out in my career, as a healthcare practice management consultant. Martha was surprised when I told her recently that I always told people that she was a role model and mentor to me. She has always been there for me with advice, referrals and friendship. After 30 years, I was finally able to pay her back by being there for her when her husband began demonstrating the signs of Alzheimer’s disease. Matty passed peacefully this summer after returning from a Florida vacation. With the help of Laura Giunta of Senior Helper’s Martha had wonderful home health attendants to make sure that Matty was able to stay comfortable at home.
For the past year, I have been listed on the Alliance for Professional Health Advocates as a mentor. http://healthadvocateprograms.com/master-list/mentors/ Take a look at some of the other mentors and the reviews they have received.
It has been my pleasure to take calls from people who are interested in becoming Professional Patient Advocates. I’ve followed up with advice, references and referrals. The only thing I’ve asked is that if I’ve helped you to advance your plans in becoming a Patient Advocate that you write a review for me either on my LinkedIn profile or on the APHA mentor page.
Now, I am in jeopardy of having my listing removed from APHA because I am not getting the feedback that is required to keep this program going. All I ask is that you post a sentence of two to this easy to fill out form. Your contact information will not be shared with anyone unless you give permission.
Please take a moment to help me to keep this service active. The review should be of my coaching/mentoring service if I have helped you to increase your business, not for my Patient Advocate services.
Here is the link where you can post a review.
Dean Witherspoon just posted a new white paper — Small Steps or Giant Leaps: What Works Best for Health Behavior Change? https://hesonline.com/free-stuff/whitepapers/smallsteps
In it he talks about the difference between lasting weight loss experienced by people who lose weight quickly, but put it all back on and those who are able to lose it quickly and then keep it off. He mentions the “Biggest Losers” diet as one in which the people are not able to maintain the weight loss because the program is too strenuous. In comparison, he shows that people who try to make just small changes, like taking the stairs instead of the elevator, will not be able to maintain their weight loss program because the rewards are just too small for the person to feel incentivized. That last one describes me.
I came to realize that most of my clients who suffer from diabetes, heart disease, COPD and cancer have all been overweight. Knowing what to do and how to do it were not enough to help these people to lose weight. Several of my clients in nursing homes have finally lost weight only because their meals are prepared for them by a dietician and there is no way for them to get other foods.
Rather than wait to take that drastic step, I am starting the Nuvo Ultimate Fat Loss Diet TODAY! http://www.newmenow.com This is a four stage program in which you lose weight rapidly while learning to maintain the weight at the same time. It is doctor and nutritionist supervised. It has many of the successful aspects of the programs that Dean talks about, including eating real food, not the shakes and bars that have been my (unsuccessful) go to plan for over twenty years.
Another part of the plan is using EFT, Emotional Freedom Technique to help you through the stressful times, and reduce the chance of emotional binging. I found a great EFT video that you can tap along with, from the Mercola people. https://www.youtube.com/watch?v=IWu3rSEddZI
Wish me well. I plan to post my weight loss and other experiences here, so look for the before and after pictures by the end of summer. Yes, this is one of the things a successful diet starts with, letting people support you.