If you have a loved one who is aging the issue is not if but when a time will come that additional help may be needed. In my experience as a medical social worker and a caregiver for my parents I know this is a conversation that is very difficult to initiate. Nobody likes to talk about aging, illness or death. Let’s be honest, this is something we all will face. This conversation involves tackling tough topics:
Getting sick and not being able to care for yourself.
What do you want done if you are unable to make medical decisions for yourself.
How do you feel about aging and eventually facing your own death?
What insurance or money do you have available if you need additional help?
Is it time to leave the place you have called home?
Is your will or healthcare power of attorney properly completed?
You want to start this conversation from a place of love and caring. It also has to be a collaboration. You also have to start slowly and be aware that it is a process. This will not be one discussion but a series of talks over time as circumstances change and new challenges may arise.
There are things you can do to help it go as smoothly as possible:
Begin the conversation when your parents are alert and healthy and can make decisions from a competent place. They will be more comfortable and less defensive having this discussion when there are no current problems or deficits.
Wait for an Opening or Create One
Move slowly. Mention a friend whose parents are ill or that you are updating your will. Suggest that it got you thinking about your mom and dad. Ask if they have thought about aging and what they would want to happen? What kind of help would they want and from who? Would they want to remain at home or consider moving to a place where more support might be available?
Share the reason you are wanting to talk about this. You want them to be safe, prepared, and understand what options are available for them. You are not angry at them and don’t believe they are incompetent if that is true. Tell them you want them to continue to have as much quality in their life as possible and you want to contribute to make that happen.
Make sure the time you initiate this discussion is optimal. Don’t do it when you have to leave in half an hour. Do it when there are no distractions or additional people that don’t need to be a part of the conversation. Don’t include too many people because that may make your senior feel more defensive. Choose a stress free time to initiate this talk.
If you have a good relationship with your parents than you may be the ideal candidate to initiate this talk. If not you may want to include a trusted family member friend, doctor, priest, neighbor, that can help your loved ones feel more comfortable about addressing these sensitive topics. If you are doing this with someone else you may want to meet ahead of time to plan on what direction you want the conversation to go and who will play what role. Rehearse what you want to say and try to anticipate their responses. Make sure the message you give your parents with someone else is a unified message.
Choose the opening topic
You don’t want to throw out all of these major questions at one time. That will feel overwhelming and cause any future discussion to derail. Pick the topic that you believe is most relevant to them and one that your parents will be most open to.
Maybe they just came back from a doctor visit. You can use that as a place to begin to address questions about potential health concerns. If you know they are feeling their home is becoming harder to maintain that gives you an entry way to ask about what their thoughts are about the next step if the house becomes increasingly hard to manage.
Some Final Thoughts
If the conversation does not go well don’t be discouraged. A process has begun that you can return to and reference at a future date. Take notes about what has been said. Perhaps you can all agree on a future time to set including whatever requests your parents make regarding the parameters. Maybe the participants can agree to gather information to facilitate the next meeting. Ask your parents if there is someone else they would like to attend future discussions.
Try to remain empathetic and compassionate with each other as you enter this uncharted water. If it is clear you need an impartial mediator to manage the discussion you might want to get a geriatric care manager. They can be found at aginglifecare.org.
Finally, be patient. This is new territory for you all. When a parent agrees to work through these issues, there is no greater gift they can give you.
Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.
Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.
When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents.He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.
Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.
A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.
In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.
Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.
In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.
He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.
MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!
He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.
Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.
Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.
His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.
Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.
While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.
So many of our community members are in this situation. Here’s what a few of them have to say…
I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb
I have [professional] caregivers during the day, so I can work. – Cathy
I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa
I feel part wife / part maid/ part cook / and I work part time. – Susan
I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley
I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel
I have to do everything plus work full time. – John
I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison
I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie
When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia
I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina
I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia
I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara
I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy
I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith
I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter
Some comments have been lightly edited for clarity
A new analysis indicates that many cancer survivors change their prescription drug use (including skipping doses or requesting cheaper medications) for financial reasons. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study provides important information on the financial burden experienced by cancer survivors, suggesting non-elderly cancer survivors are particularly vulnerable to this phenomenon.
Although research has shown that cancer drugs can represent considerable costs for cancer patients and their families, there is limited information about changes in prescription drug use for financial reasons among cancer survivors. To further investigate this, researchers from the American Cancer Society, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health used 2011-2014 data from the National Health Interview Survey, an annual household interview survey conducted by the CDC. This nationally representative survey included 8931 cancer survivors and 126,287 individuals without a cancer history.
Among non-elderly adults, 31.6 percent of those who had been recently diagnosed and 27.9 percent of those who had been previously diagnosed (at least two years earlier) reported a change in prescription drug use for financial reasons, compared with 21.4 percent of adults without a history of cancer. “Specifically, non-elderly cancer survivors were more likely to skip medication, delay filling a prescription, ask their doctor for lower-cost medication, and use alternative therapies for financial reasons compared with non-elderly individuals without a cancer history,” said the American Cancer Society’s Ahmedin Jemal, DVM, PhD, a senior author of the paper. The study also showed that among privately insured non-elderly cancer survivors, one-third of survivors enrolled in high-deductible plans asked their doctor for lower-cost medications compared with less than one-fifth of survivors enrolled in low-deductible plans.
Changes in prescription drug use for financial reasons were generally similar between elderly cancer survivors and elderly individuals without a cancer history. This is likely because of uniform healthcare coverage through Medicare.
The findings may have significant policy implications. “Healthcare reforms addressing the financial burden of cancer among survivors, including the escalating cost of prescription drugs, should consider multiple comorbid conditions and high-deductible health plans, and the working poor,” said Dr. Jemal. “Our findings also have implications for doctor and patient communication about the financial burden of cancer when making treatment decisions, especially on the use of certain drugs that cost hundreds of thousands of dollars but with very small benefit compared with alternative and more affordable drugs.”
In an accompanying editorial addressing the financial toxicity of cancer, Daniel Goldstein, MD, of the Rabin Medical Center in Israel and Emory University, stressed the need to avoid unnecessary testing and treatments. He added that “when two different treatments exist with equivalent efficacy and safety, the cheaper treatment should always be chosen.”
Full Citation: “Do cancer survivors change their prescription drug use for financial reasons? Findings from a nationally representative sample in the United States.” Zhiyuan Zheng, Xuesong Han, Gery P. Guy Jr., Amy J. Davidoff, Chunyu Li, Matthew P. Banegas, Donatus U. Ekwueme, K. Robin Yabroff, and Ahmedin Jemal. CANCER; Published Online: February 20, 2017 (DOI: 10.1002/cncr.30560).
About the Journal CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
About Wiley Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
In this guide, let’s look at ways those with disabilities can stretch their dollars. The purpose here is not to portray anyone as “less than” or “needing special help.” For us, the bottom line is “If you can save money, why not do it?” We just want to make sure you know about the options.
There’s one thing we know for sure: people like Jon Morrow, Joni Eareckson Tada, Stephen Hawking, and so many others, prove that a disability doesn’t mean “incapable.” Not by a long shot.
Discounts, Services, and Special Offers Available to People with Disabilities
Here’s a two-word tip that can save you hundreds or thousands of dollars every year: Always ask.
Businesses typically instruct their employees to refrain from suggesting discounts. That’s not because they don’t want you to save money. It’s because they don’t want to risk offending someone
Many customers would be glad if a clerk pointed out a senior discount, or “15% off for women on Tuesday” special, but some shoppers would get angry at the suggestion. That’s why store workers seldom say anything. In most cases, you need to know in advance about available specials, or you need to ASK.
Asking, by the way, is a simple procedure. You need say nothing more than this: “Hey, do you offer any special discounts that I may be unaware of?”
Businesses love it when the word gets out about their specials. Discounts bring in customers and discounts encourage repeat visits. They WANT you to know. Our aim here is to help them out and alert you to special prices you may be missing out on now.
Organizations that Help People with Disabilities Get Discounts and Special Pricing
Let’s begin by reviewing a few of the organizations that advocate for people with disabilities. These groups can provide all kinds of assistance. They can also be an excellent platform for finding opportunities to network with others.
Discounts for People with Disabilities
This site was founded by a couple who totally “understand the financial burden of disabilities.” After Mara was diagnosed with Multiple Sclerosis, their lives changed dramatically. Her income-producing ability decreased, but expenses shot up.
They first discovered a tax discount Mara’s disability made them eligible for. That encouraged them to look for other potential savings. They needed every penny they could save.
And once they started looking, they began finding opportunity after opportunity. So they started a website to help others with a disability get help.
Features of Discounts for People with Disabilities: You can search by U.S. state and county to find special offers close to you. Categories included are extensive.
Here are just a few of the types of discounts listed:
Assistive technology discounts
Banking services special offers
Health care supplies at reduced rates
Prescription plans for discounted medicine
Tax breaks for people with disabilities
Transportation help and rides for those with disabilities
Be advised that not all (or even most) of the offers you will find on this website are free. Many, however, are low-cost or tied to another program that will help with a purchase. Use the search feature there as a way to open your eyes to the potential.
This site is a clearinghouse for information on programs and services available via the U.S. federal government to those with disabilities.
Here are the categories covered:
Benefits for people with disabilities
Civil Rights and those with disabilities
Community Life – includes information about financial help, independent living, personal assistants for people with a disability, community-based help, and more.
Educational Assistance for students with disabilities
Employment Opportunities for those who have disabilities
Health, Housing, and Transportation assistance for those with disabilities
Emergency Preparedness, Technology, and Accessibility
Check the Quick Links section for easy access to programs and phone numbers that can open the door to a whole array of services aimed at providing help for those with disabilities. This site alone has the potential to save you thousands of dollars annually.
Invisible Disabilities Association
Not all disabilities are obvious. Some suffer from mental disorders, learning disabilities, and other maladies that are often “hidden.”
According to the Americans with Disabilities Act (ADA), anyone who “has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment” qualifies for benefits under the act.
Accordingly, the Invisible Disabilities Association (IDA) seeks to reach and educate those who may not realize their rights and the potential benefits available to them. While the IDA doesn’t list specific discounts or special purchasing offers for individuals with a disability, it is an excellent clearinghouse for information.
Here are the categories covered:
The definition of “invisible disability”
Living with invisible disabilities – encouragement and online resources
Programs for those with disabilities, including the Brain Ideas Symposium
Disability awareness – including a blog and a newsletter
Disability awareness events – seminars, awards ceremonies, other events
Networking and involvement – social media and a support community
If there’s one message we want to get delivered with this guide is that discounts, services, and special offers for people with disabilities are widely available. In most cases, though, you need to know about them and/or ask about them.
Few people will approach someone with a disability and say, “Hey, did you know you’re eligible for a special program?” The risk of offending someone is just too big to risk saying something.
Microsoft, for example, goes above and beyond in their desire to employ workers with disabilities. Microsoft success stories abound, yet you generally need to hear about the opportunity in order to take advantage of it.
SeaWorld and other entertainment providers often provide programs to help guests with disabilities avoid long queues for rides and offer discounted admission for these individuals and their assistants – but you have to ask. Call guest services in advance to find out what you’re eligible for. They want you to have fun, and they’ll often go the extra mile to make sure you do.
Managing a disability can be tough, but you don’t have to handle it all by yourself. Plenty of people, programs, and organizations want to help. Your end is let your needs be known. Never feel bad about asking for help. None of us can function well without the love and assistance of others.
Maxwell Ivey (The Blind Blogger) is an inspirational and motivational personal coach who also runs a business brokering carnival rides and amusement equipment. A native Texan, Max loves to sing and spend time with his unique and crazy dog, a “Greymation” named Penny.
Taking preventive steps to help reduce the risks of injuries sustained from falls and slips can improve a senior’s quality of life. Aging adults can make accommodations to their home by age proofing their home to minimize future in-home accidents. Age-proofing a home isn’t about remodeling the entire house. Safety updates can be as simple as eliminating clutter or installing new light bulbs. Although purchasing a fire extinguisher, buying a new bed, or paying contractors to install handrails or an in-home elevator may all require spending some money however, these costs are helpful investments to ensure a senior’s safety and quality of life. This infographic published by Easy Climber, provides a home improvement checklist to the aging population to help make aging in place safer.
Easy Climber is part of one of the country’s largest home remodeling companies, an organization dedicated to providing products and services that enable seniors to successfully age in place.
Home health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years.
The federal regulations, published last month, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.
They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.
Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.
The new rules are set to go into effect in July, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.
While industry lobbying could derail the regulations or send them back to the drawing board, that isn’t expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.
“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).
Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.
Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement isn’t possible. These services are not for patients who need full-time care because they’re seriously ill or people who are dying.
Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:
In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.
Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.
“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.
While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.
For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.
Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.
A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.
NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.
For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.
Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.
“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.
Plans Of Care
Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.
“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.
In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.
Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency can’t discontinue services merely because it doesn’t have enough staff.
The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.
“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
As we grow old, our bodies and immune system becomes weak and we get prone to developing various health issues. In addition to the possibility of developing various diseases commonly associated with old age, such as dementia, diabetes, and cardiovascular diseases, increasing age also limits our mobility.
Joint pain and arthritis are common problems among the elderly. Even if people take good care of themselves and keep the diseases at bay, they do get affected by mobility issues as they age which affect the quality of their lives.
Here comes the role of assistive technology. Commonly known as mobility aids, the sole purpose for the development of these tools is to enable the elderly to continue with their activities and regular lifestyle. With the help of assistive technology, seniors can avoid becoming dependent on their family members or nurses, and can perform their tasks on their own.
What Comes Under Assistive Technology?
Dr. Helen Hoenig, an Associate Professor at Duke University and Chief of Physical Medicine and Rehabilitation at Durham VAMC, assistive technology can be defined as “all those devices that are used to compensate for physical limitations”. According to her, the term can be narrowed down to refer to those devices, tools, orthotics, and prosthetics that are used to help someone carry out an activity.
How Assistive Technology Helps in Improving the Quality of Life for Elderly
Seniors, when faced with limited mobility, become dependent on others for carrying out even the simplest of tasks of their daily lives, such as walking, eating, self-cleaning, and changing clothes. Many people fail to accept this new reality of life or do not like to ask for help in the simplest acts. In the absence of any solution, seniors become unhappy and even go into depression.
On the other hand, dealing with older people with limited mobility is also a difficult and challenging task for their families. When family members are unable to take good care of such old people, they transfer them to nursing facilities or assisted living centers. Moving away from their loved ones is even more disturbing for a majority of seniors and makes them more unhappy and depressed.
Mobility Aids can be of extreme help in such situations, both for the elderly and their families. They improve the mobility of the elderly and thus, enable them to perform their own tasks. Also, when seniors have such helpful devices, they do not give up on life and continue pursuing their interests. In this way, the increasing age does not affect the quality of their lives.
Common Mobility Aids and Their Link to Happiness
Mobility aids that are most commonly needed and used by elderly include:
Portable lifters and Ramps
Recline and Lift Chairs
Car Transfer Aids
With the use of any one or multiple of the above mentioned devices, the quality of life improves in old age. This may not be important to young and healthy people but for seniors, even the ability to continue living a normal life despite suffering from limited mobility is of great pleasure. If an old person with arthritis is able to visit his/her friends, to go to his/her favorite restaurant, or the nearest park, the pleasure he/she will get is beyond comparison.
When disabilities or memory impairment make going out more difficult, seniors can feel like they’re not able to do the things they love anymore. Going online can help them stay social, learn new things, and have fun without the hassle of going out.
That is, of course, if they can navigate the internet!
Here are some tools to help seniors get online, stay safe, and have a good time — giving us time to get some things done or maybe even have a few moments of peace and quiet!
Skills to get started
If your senior is able to attend classes in person, check with SeniorNet or your local library to see if they offer services to help people get online. If not, there are online classes and videos you can help them access.
The BBC created Webwise as a beginner’s guide to the internet. It starts with computer basics, walks you through email, introduces users to the internet, and helps guide seniors through the basics of social media. It even explains how to stay safe online. This is a great resource.
If you’re helping set up a computer for someone with visual or hearing impairments or trouble typing, this site will walk you through adjustments you can make so they can have an easier time navigating the web.
No one can predict the future. As mom and dad start to age and life gets a little more challenging, we do our best to tend to their medical needs to keep them as healthy for as long as possible. But one area that is often overlooked by many parents and their kids is having the money talk. Who inherits any assets that mom and dad have? Who oversees the estate? Is there enough money to pay for a home healthcare worker if needed?
When illness or death strikes, it’s a stressful time. To make things easier on everyone, it’s best for parents to talk about finances with their children years ahead of time, when everyone can think clearly and is more relaxed.
While there is indeed a lot of ground to cover, here are 10 must-ask questions that need to be answered.
Have they named a durable power of attorney to manage their finances?
The first step is to find out if they have named a Durable Power of Attorney (POA). Without a POA in place, you’ll have to go to court to get guardianship of your parents in order to access accounts on their behalf.
Where do they keep their financial records?
Whether they keep their money and documents in a bank, a safe or under the mattress, you need to know where to find records when you need them. Also, find out the location of keys or codes to lock boxes or safes.
What are their bank account numbers and names of their financial institutions?
In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have and where do they keep their statements?
What are your parents’ monthly expenses?
Gather information on their mortgage, car payment, credit card debt, electric bills and other expenses.
How do they pay their bills?
If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks?
How much is their annual income and where does it come from?
Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony?
Do they receive Medicare, Medicaid or Social Security?
If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance.
What kind of medical health insurance do they have in addition to Medicare?
Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension?
Do they have long-term care insurance?
A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, and they can no longer live on their own, what can they afford in terms of housing?
Do they have an accountant or financial planner?
Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional with them to discuss their situations.
It’s best for parents and children to figure things out about money and plan for the future as soon as they can. All too often it’s too late, and trying to discuss money in a stressful time leads to more stress, arguments, saying things you regret, hurt feelings and broken relationships. Have the money talk now, before it’s too late.
It can be uncomfortable to do, but letting people know you could really use their help is important. Ask a neighbor if they could pick a few things up for you while they’re out. Let your community organizations know you could use a volunteer for a few hours to clear up your yard or keep your mom company. See if your friend would come cook dinner and eat with your family once a week. The more specific you are, the better your chances.
It can be a real challenge to break up tasks into pieces that strangers can help you with, so start small. Hopefully soon certain asks will be taken off your plate without you having to do anything about it — the neighbor who mows your lawn when he does his and the friend who’ll take your dad to the doctor every week.
People will say no and let you down, but people will also help.
Many people want to help, they just don’t know what you need. It’s like that friend you keep meaning to see, but never make real plans with — get specific and it’ll actually happen. People feel good about helping. Think of all the times people have helped you in the past — they’ll be there for you again.
Sometimes people offer to help just like they ask you how you’re doing today or comment on the weather — it’s just a reflex. They’ll be surprised to hear from you if you call them up and ask them to follow through.
Other people really mean it when they say they’d like to help, but they don’t know what to do. Often times they’ll come through if you ask them to do a specific task.
It can be frustrating to ask people for help multiple times and have them turn you down. Everyone’s busy, not just caregivers, but there are ways around feeling like coordinating help is more effort than it’s worth.
Apps like Tyze and Caring Bridge help you by saying what you need and when you need it and allowing people to step in when they’re available. When people offer to help, add them to your network of supporters on the app. Make a list of the things you need help with. Ask them in person or over the phone, too.
Medical professionals often have to put their guard up against getting too involved with patients, so they may cut you off or seem cold when you tell them how much you struggle. They may also not take the time to figure out what, exactly, it is you’re asking for.
If you ask direct questions — can I get help with this bill? can I get medication delivered? is there home care help available? — you may have better luck.
Ask yourself this
Do you want help or someone to listen?
If you’re frustrated with someone’s attempts at giving you advice, ask yourself what you’re looking for from the conversation. Do you want advice? Offers of actual help? Or do you just want someone to listen and encourage? Let them know what you want.
Do you want an expert or someone who’s been through it?
There’s a time when you want specific advice and a time when you’d like to commiserate and hear about someone else’s experiences. Remember that an expert may have never actually had to apply his or her advice. Each person’s experiences are unique, so what helped one person may not help you.
What am I asking for?
How much of the background information does someone need to know to understand how they can help you? So many times in life a brief question is more likely to get attention than a long story.
Who to ask
Your doctor likely has no idea how much things cost or what programs are available to help. Doctors also rarely have the time to listen. What you can do is ask your doctor or nurse to refer you to a social worker.
I still remember the days when my parents chose my wardrobe. They paid for my clothes and therefore I had to wear what they wanted. Needless to say, their selections were less than fashionable, resulting in me getting a healthy dose teasing on the playground. This helped me learn a valuable lesson: when others get to make decisions on your behalf, it’s really hard for them to set aside their own tastes and motives. I call this the Decision Maker Bias.
Many decades later, I now find myself heavily involved in my parents’ care and often have to decide what’s best for them. Should they move into a facility or live on their own? Do they need a caregiver, or perhaps even a geriatric care manager? Should they downsize or keep living in their house with a stairway? I constantly catch myself forming strong opinions on each of these topics, but after some introspection I realize that there is a trace of my own interest in them. I genuinely want my parents to be happy, so I created a framework that helps me spot decisions where I might be affected by the Decision Maker Bias.
We often try to get our parents to move closer to ourselves, thinking that they will benefit from us being able to spend more time with them. However, we also have to consider the cultural impact on our parents’ lives. Would a culturally conservative 90 year old from the Midwest feel at home near Berkeley, CA? Will they be able to connect with their neighbors, and will they find a local church that fits their needs? While it’s true that we might be seeing them on weekends, they may experience isolation and depression on all other days of the week. Also, their old friends and neighbors they leave behind are often restricted in their mobility, making it very hard to see each other again. When relocating an elder, we have to remember that this is more traumatic to them than we can imagine.
Safety is the cornerstone argument in almost all elder care discussions; we use it to downgrade houses, move our parents to assisted living facilities, veto long trips and outdoor activities, etc. But what we often forget is that money can buy safety – you can hire caregivers, install home safety equipment, use smart monitors, etc. In other words, the question should not be: “Is it safe?” but instead: “Can we afford to make it safe?” You won’t always be able to say yes, but be aware that being an overprotective adult child is not always in the best interest of your parents – sometimes the extra effort and cost it will take to keep them safe might be worth the happiness they’ll get out of their wishes for autonomy and independence coming true.
I don’t believe that this is happening between me and my parents, but I’ve certainly encountered it as part of my work at Kindly Care – as caregivers and elders spend a lot of time together, inevitably they start forming strong bonds which can make the adult children jealous. Particularly, the topic of oversharing sensitive family stories seems to come up a lot. Caregivers are in a difficult spot – as a companion, a part of their job is to be a great listener, but not all topics are good for their job security. Adult children can get suspicious that the caregivers are being noisy, and it’s hard to determine who initiates such conversations. What’s clear in those situations is that the adult children face the Decision Maker Bias: their hurt feelings can hinder their parents’ ability to bond with their caregiver.
When encouraging my Mom to be more active, I usually suggest that we go for a walk. I just love the outdoors, and it’s one of my favorite ways to bond with her. However, I recently read in the New England Journal of Medicine that dancing trumps all other recreational activities when it comes to mental acuity in aging. Well, dancing is my least favorite activity, and now I face the same dilemma that parents face when helping their kids decide which sports to pursue – should I encourage something that we’ll both enjoy? This just reminds me once again that our personal taste has a real impact on the people we care for.
Are there any other areas where you can spot the Decision Maker Bias? Leave them in the comments so that we can all be more aware, and get better at realizing our bias when we make decisions on behalf of the ones we love.
Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.
You’re a family caregiver and need outside help. These days, most large and mid-size towns have caregiving agencies. Before you sign with an agency do your research. Keep in mind that it can you weeks to adapt to a paid caregiver. That’s because you are creating a partnership.
My husband’s legs are mostly paralyzed and I’m his primary caregiver. With help from therapists he learned to stand, stand and pivot, and walk 50 steps with the aid of a walker. Still, he needs lots of support. I’m on the job 24/7 and rely on paid caregivers. A caregiver comes each morning and stays for two hours.
The training and expertise of paid caregivers varies widely. Retired nurses, nursing assistants, and nursing students are an ideal match for our situation. Just as I want the best for my husband, I want the best for paid caregivers. You probably want the same and these tips will help you forge a partnership..
Start with a home “tour”
Even if your place is small, the caregiver needs to get a sense of the space. Caregivers need to know where the linen closet is, where incontinence supplies are stored, which drawers contain underwear, and which contain socks. I store towels in baskets with labels: towel sets, hand towels, floor towels (for the shower wheelchair puddles and drips).
Explain your daily routine
Our routine is so detailed that the agency created a task list for caregivers, a practical idea and one you may wish to use. I think a routine helps caregivers and care receivers alike. It also helps with time management. Spending too much time on one task deletes others.
Take advantage of perks
Most caregiving agencies allow caregivers to do light housekeeping and you may as well take advantage of this. I ask the caregiver to dust, vacuum, clean mirrors, etc. The caregivers know where my cleaning supplies are stored and I keep them well stocked.
Follow agency rules
Paid caregivers aren’t allowed to dispense prescribed medications or apply prescribed lotions. Always heed these rules. Still, I tell the caregiver about the medications my husband is taking because some cause sleepiness.
Frame concise, clear sentences
Caregivers must adapt to different settings, people, routines, and equipment. Often they race from one client to the next. To save time, be as concise as possible. For example, “Please carry the laundry basket to the laundry room.”
Share special needs
My husband wears a brace when he practices walking and getting ready is a process. The nine steps: 1) put on support socks; 2) put on shoes; 3) put brace on left leg; 4) put lift on right foot to equalize the length of his legs; 5) put half sock on left shoe so the paralyzed leg can slide; 7) get the walker; 8) brace the walker as he stands; 9) Be ready to catch him if he falls. I help my husband stand and follow behind with the electric wheelchair.
Follow the Golden Rule
Treat caregivers as you would like to be treated. When the caregiver leaves I say, “Thanks for your help.” According to one caregiver, we’re the only people who do this. Without paid caregivers I would be an exhausted, aching, discouraged wife. Paid caregivers make my days easier. Cheers for them all!
Phyllis Krantzman knows what she should do, but like many of her peers, the 71-year-old doesn’t know how to approach a casual acquaintance to ask who will take care of her when she needs it most.
Krantzman, of Austin, Texas, is among a growing number of seniors who find themselves alone just when aging and end-of-life care becomes real.
Unmarried, with no children, her younger sister, by seven years, died in 2014. Krantzman’s social network is limited to a handful of work colleagues and a few acquaintances.
“I’m very fearful of when I reach that place in my life when I really need help and maybe can’t take care of myself anymore,” she said. “I have nobody to turn to.”
Krantzman represents a universe that’s come to be known among geriatric specialists as “elder orphans” — seniors with no relatives to help them deal with physical and mental health challenges. Their rising numbers prompted the American Geriatrics Society this week to unveil guidelines for a segment of these older adults who can no longer make their own medical decisions and have no designated surrogates. The nonprofit dubbed them “unbefriended” and called for a national effort to help prevent a surge among incapacitated seniors who don’t have a decision maker and face a health crisis.
Single seniors have always existed, but demographic and social changes have slowly transformed aging America. In 1900, average life expectancy was 47. Now, the combination of increased longevity, the large and graying baby boom generation, the decline in marriage, the rise in divorce, increased childlessness and family mobility has upended the traditional caregiving support system.
Among the indicators:
— A Centers for Disease Control and Prevention report this year shows the number of Americans older than 100 years old increased almost 44 percent between 2000 to 2014.
— Twenty-two percent of people over age 65 are — or risk becoming — elder orphans, according to a 2015 study by New York geriatrician Maria Torroella Carney.
— A U.S. Census report from 2014 projected by 2050 the 65 and older population to be 83.7 million — almost double the 2012 estimate of 43.1 million.
— The nonprofit Population Reference Bureau in Washington, D.C., reported earlier this year that family provides more than 95 percent of informal care for older adults who aren’t in nursing homes.
“Americans are spending less time than ever in the married state,” said Susan Brown of the National Center for Family & Marriage Research at Bowling Green State University in Ohio, which “raises questions about who’s going to care for these people as they age and experience health declines.”
Reference Bureau demographer Mark Mather said the combination of aging boomers and family dislocation is creating “a potential caregiving crisis or at least major challenges down the road.”
The oldest boomers are now 70. With more on the horizon, the impact of smaller family size will become more pronounced: Baby boomers had fewer children than previous generations and significant numbers are childless, said demographer Jonathan Vespa, of the U.S. Census.
“As people have fewer children, there are fewer people in that next generation to help take care of that older generation,” he said.
New 2015 U.S. Census data also reflects more elders who live alone — 42.8 percent of those 65 and older. Yet new twists have emerged, such as cohousing, in which people live independently in housing clusters with a common building for meals and socializing. Such thinking, said gerontologist Jan Mutchler, of the University of Massachusetts Gerontology Institute in Boston, suggests a “shift [in] the way people are thinking about who can I rely on and who’s going to be there for me.”
Katie McGrail, 77, spent much of her working life in San Antonio or New York, finally retiring to Texas five years ago. McGrail and her friends daydream about “having these little houses around the spoke of a wheel and at center have a nurse and a good cook.”
Mary Gleason, 85, is an unmarried only child with no children. She’s lived on St. Thomas in the Virgin Islands for 51 years, where she developed a close group of “extremely supportive friends.” Most, she said, are five to 15 years younger, which proved important in January when Gleason had open heart surgery.
“That was it,” she said, noting she never talked about future care. “Now that I’m feeling so much better, I try to keep away from discussing that kind of stuff.”
It’s a mindset Mutchler knows well.
“People in general avoid planning for unpleasant things,” she said. “A lot of people don’t have wills or think about long-term care or what they would do if they needed it.”
Timothy Farrell, a physician and associate professor at the University of Utah School of Medicine in Salt Lake City who worked on the new policies, said he would “regularly encounter patients with no clear surrogate decision maker.”
The guidelines include “identifying ‘non-traditional’ surrogates — such as close friends, neighbors, or others who know a person well.”
Boosting social ties among elders is part of a national campaign launched last week by the AARP Foundation and the National Association of Area Agencies on Aging, a nonprofit. The aim is to combat loneliness.
Krantzman says insomnia, which has plagued her for decades, has deepened her isolation.
“I had to give up having close friends and that is one of the reasons why I find myself so alone,” she said.
Although she works part-time and lives in a government complex for low-income seniors, Krantzman said the computer she bought at age 62 has expanded her reach to connect with others.
“The computer is so important to me because I have so few people in my life,” she said. “Having the computer thoroughly altered my entire life.”
Generally to be your dependent, you must provide at least half of their financial support and they need to be either related to you or have lived with you for a full year.
If several family members provide half or more of the support, you must choose which family member will claim them as a dependent. You’ll need to file a mutual support declaration, form 2120. A person can only be claimed as a dependent by a single tax payer.
Not sure if the person you care for is a dependent in the eyes of the IRS? Find out here.
Payments your caree makes to you
If you take care of a family member and they give you money to help with household expenses, you don’t need to pay taxes on this. This is not considered income by the IRS. It does, however, count as support in determining if your family member is a dependent for tax purposes.
If you cash a family member’s social security benefits and use them to pay for their care, you don’t pay income tax on them. It’s still considered their income.
Medical and dental deductions
If you itemize your tax deductions on Schedule A, you can deduct medical expenses for you, your spouse, and your dependents.
In order for medical expenses to be tax deductible, they have to total more than 10% of your adjusted gross income (AGI). If you or your spouse is 65+, they have to total more than 7.5% of your AGI.
How much can you deduct
You can only deduct expenses over the allowable amount. If you’re 32, your AGI is $35,000, and you have $7,510 in medical expenses, here’s how the math would look:
35,000 x .10 = D 7,510 – D = medical expense deduction
35,000 x .10 = 3,500 7,510 – 3,500 = 4,010
You would be able to deduct $4,010 of medical expenses on your taxes.
What can you deduct?
Payments and co-payments to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, and nontraditional medical practitioners
Payments for in-hospital or residential care, including the cost of meals and lodging
Rehabilitation, therapeutic, preventative, and personal care services for people who are chronically ill who need support for ADLs
The cost of eyeglasses, contact lenses, hearing aids, false teeth, crutches, wheelchairs, and guide dogs
Any money paid to your spouse, the parent of the qualifying person, any of your dependents, or anyone under the age of 19 is not eligible.
You cannot claim this tax credit if you’re married filing separately.
If you pay an individual, you may be required to pay social security, Medicare taxes, and unemployment taxes if you are considered a household employer. You cannot claim expenses for anyone you paid ‘under the table.’
Most states allow you to deduct a percentage of your federal tax credit from your state taxes. Check to see if your state provides a tax credit for dependent care.
If they’re not a dependent
Even if someone isn’t considered your dependent, they can still claim their own medical expenses on their tax return.
Elderly and disabled tax credit
This credit is for people who are elderly or disabled and file their own taxes (not as your dependent). If someone 65+ or who is disabled (and any age) has an AGI lower than the required threshold, they can get the elderly and disabled tax credit. This goes on Schedule R.
Five years ago, Dr. Ira Kirschenbaum, an orthopedic surgeon in the Bronx who replaces more than 200 knees each year, would have considered it crazy to send a patient home the same day as a knee replacement operation.
And yet there he was this year, as the patient, home after a few hours. A physician friend pierced his skin at 8 a.m. at a Seattle-area surgery center. By lunch, Kirschenbaum was resting at his friend’s home, with no pain and a new knee.
“I’m amazed at how well I’m doing,” Kirschenbaum, 59, said recently in a phone interview, nine weeks after the operation.
What felt to Kirschenbaum like a bold experiment may soon become far more standard. Medicare, which spends several billions of dollars a year on knee replacements for its beneficiaries — generally Americans 65 and over — is contemplating whether it will help pay for knee replacement surgeries outside the hospital, either in free-standing surgery centers or outpatient facilities.
The issue is sowing deep discord in the medical world, and the debate is as much about money as medicine. Some physicians are concerned that moving the surgeries out of hospitals will land vulnerable patients in the emergency room with uncontrolled pain, blood clots or other complications.
But proponents of the change say it can give patients more choice and potentially better care, as well as save Medicare hundreds of millions of dollars. Already, an “overwhelming majority” of commenters said they want to allow the surgeries out of hospitals, according to recent rule-making documents.
The final decision, which could come within a year, would also act as a test of sorts for Donald Trump and his new administration. They will weigh whether to limit government controls, as Trump has often suggested, or to bend to pressure from hospitals and doctors, many of whom oppose the change.
“I think the question will come down to two things,” said David Muhlestein, senior director for research at Leavitt Partners, a leading health consulting firm. “It’s the balance of trying to reduce regulations and let the market function — and the competing interest of vested parties.”
Demand for total knee replacements is growing — 660,000 are performed each year in the United States. That number is likely to jump to two million annually by 2030, making this complex and expensive operation one of surgery’s biggest potential growth markets.
Even if the policy change is made, Medicare would still pay for patients to get traditional inpatient surgery. But with the agency also paying for the bulk of outpatient procedures, there would be a huge shift in money — out of hospitals and into surgery centers. Medicare could save hundreds of millions of dollars if it no longer needed to pay for multiple-day stays at the hospital. Investors at the outpatient centers could profit greatly, as could some surgeons, because doctors often have an ownership stake in the outpatient centers where they operate.
Whether the shift is beneficial for patients remains an open question. Medicare patients tend to spend nearly three days in a hospital, data shows. Forty percent of Medicare patients also spend time in a rehabilitation facility for further recovery. The data, which reflects knee replacement operations from 2014, suggests that Medicare patients are taking advantage of the post-operation support at hospitals and aftercare centers. Given that, it is unclear the percentage of eligible patients who would choose outpatient care.
But improvements in surgery — from new medicines to control bleeding to better pain management techniques — mean that, for some patients, the days of close medical supervision are no longer necessary.
Kirschenbaum, who is in favor of the change, acknowledged that outpatient surgery would be the right move for only a small subset of his Medicare patients — perhaps 10 to 15 percent — who have good caretaking at home and few chronic health issues. But it would not be for the people who are frail, live alone or in a dwelling with stairs, he said. The decision about whether an outpatient surgery should be done instead of an inpatient one tends to be made by the physician and patient.
“We want to make sure patients — when they go home, they’re safe, no question,” said Kirschenbaum, the chairman of orthopedics at Bronx-Lebanon Hospital Center and a founder of SwiftPath, a company that offers technical support to outpatient joint replacement centers.
Perhaps of equal concern to patients are the financial consequences, because even though less care is given, outpatient procedures require higher out-of-pocket costs for patients. Medicare covers inpatient hospital stays, aside from a $1,288 deductible. While Medicare rules stipulate that the outpatient would pay no more than this amount for the procedure itself, he could face additional fees for items like medicines, and Medicare would not cover aftercare at a skilled nursing facility.
The battle lines over outpatient knee replacements began forming in 2012, when Medicare first considered removing the surgeries from its “inpatient only” list of invasive and complicated medical procedures. Many orthopedic doctors and hospitals rose up in protest, calling the proposal “ludicrous” and “dangerous” and prompting Medicare to abandon the idea.
Dr. Charles Moon, who has performed knee replacement surgeries at Cedars-Sinai Medical Center in Los Angeles, fired off a letter at the time saying that knee replacement patients stayed at his hospital for 2.5 days on average, and that that was “considered borderline safe” given the need to monitor patients’ response to clot-busting medications.
Other objectors cited research showing that patients who received knee replacements as outpatients were twice as likely to die shortly afterward, and that even one-day-stay hospital patients were twice as likely to need a follow-up surgery, compared with those who remained inpatients longer.
“While we realize this can be good for some patients, it’s not for all patients and all locations,” said Dr. Thomas C. Barber, the chairman for the American Academy of Orthopaedic Surgeons’ advocacy council.
Yet the proposal has gained renewed momentum, backed aggressively by some surgeons and surgery center investors who say that their accumulating experience justifies the change. In recent months, Medicare has signaled a strong interest in outpatient knee replacements, noting the potential for “overall improved outcomes” as well as the potential savings for the government program.
The final decision is made by Medicare officials in the annual course of proposing changes, seeking public input and announcing a final rule. If Medicare does decide to make a change, it would probably not be put into effect until a year or so later.
In an interview, Thomas Wilson, the chief executive of the for-profit Monterey Peninsula Surgery Centers, an outpatient clinic, said his doctors have replaced knees of hundreds of adults — 59 years old on average, but up to 82 — with low complication rates and sky-high satisfaction rates. He said advances in surgical technique, anesthetics and patient education make it possible.
Presented with such evidence, a panel that recommends hospital outpatient payment policies to Medicare officials unanimously recommended in August that Medicare remove the procedure from the “inpatient only” payment list.
Wilson said that as a first step, doctors should use strict criteria for choosing which patients are good candidates, like a low to moderate body mass index and a healthy heart and lungs.
Patients who meet the criteria are teamed with a friend or family member who works as a coach. The patient and coach attend an educational session before the operation, and the coach is also there to help after.
The patient is typically discharged after 23 hours in the outpatient center, and a home health service or private nurse follows up. Patients also go on to physical therapy.
“Our mix is like our regular mix of patients,” said Wilson, whose center advertises a knee replacement surgery for $17,030. “It’s not what we call unicorns, not 49-year-old marathon runners. These are average folks who need to have a knee or hip replaced and they’re generally not sick.”
But Barber and others worry that moving the procedure outside the hospital could become a norm or an expectation, even though some patients, especially those with complicating conditions like diabetes and heart disease, need the added support of a hospital team. Patient safety could be compromised, they warned.
Kirschenbaum said undergoing surgery has changed the way he approaches patients. Now he can roll up his pant leg, show a scar and tell them: “You can do this, too.”
In the operating room, “with a knife in my hand, nothing has changed,” he said. “But what has changed is how we treat them before and after. The education, support and being available — it’s very important.”
This story has been corrected. An earlier version of this article misstated Medicare’s policy on certain outpatient surgeries. For surgeries that can be done either as an inpatient or an outpatient, outpatients can be charged no more than the inpatient deductible for the procedure itself; the usual 20 percent outpatient copay doesn’t apply.
At age 88, Elizabeth Fee looked pregnant, her belly swollen after days of intestinal ailments and nausea. A nurse heard a scream from Fee’s room in a nursing home, and found her retching “like a faucet” before she passed out.
The facility where she died in 2012 was affiliated with a respected San Francisco hospital, California Pacific Medical Center, and shared its name. Fee had just undergone hip surgery at the hospital, and her family, pleased with her care, said they chose the nursing home with the hospital’s encouragement.
Laura Rees, Fee’s elder daughter, said she was never told that the nursing home had received Medicare’s worst rating for quality — one star. Nor, she said, was she told that state inspectors had repeatedly cited the facility for substandard care, including delayed responses to calls for aid, disrespectful behavior toward patients and displaying insufficient interest in patients’ pain.
“They handed me a piece of paper with a list of the different facilities on it, and theirs were at top of the page,” Rees said in an interview. “They kept pointing to their facility, and I was relying on their expertise and, of course, the reputation of the hospital.”
Fee had an obstructed bowel, and state investigators faulted the home for several lapses in her care related to her death, including giving her inappropriate medications. In court papers defending a lawsuit by Fee’s family, the medical center said the nursing home’s care was diligent. The center declined to discuss the case for this story.
The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.
Yet many case managers at hospitals do not share objective information or their own knowledge about nursing home quality. Some even push their own facilities over comparable or better alternatives.
“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”
Hospitals say their recalcitrance is due to fear about violating a government decree that hospitals may not “specify or otherwise limit” a patient’s choice of facilities. But that rule does not prohibit hospitals from sharing information about quality, and a handful of health systems, such as Partners HealthCare in Massachusetts, have created networks of preferred, higher-quality nursing homes while still giving patients all alternatives.
Such efforts to help patients are rare, said Vincent Mor, a professor of health services, policy and practice at the Brown University School of Public Health in Providence, R.I. He said that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.
“They’re giving them a laminated piece of paper” with the names of nearby nursing facilities, Mor said. For quality information, he said, “they will say, ‘Well, maybe you can go to a website,’” such as Nursing Home Compare, where Medicare publishes its quality assessments.
The federal government may change this hands-off approach by requiring hospitals to provide guidance and quality data to patients while still respecting a patient’s preferences. The rule would apply to information not only about nursing homes but also about home health agencies, rehabilitation hospitals and other facilities and services that patients may need after a hospital stay.
“It has a substantial opportunity to make a difference for patients,” said Nancy Foster, a vice president at the American Hospital Association.
Even the worst nursing homes are nearly full because hospitals keep sending patients to them.
But the rule does not spell out what information the hospitals must share, and it has yet to be finalized — more than a year after Medicare proposed it. The rule faces resistance in Congress: The chairman of the House Freedom Caucus, Rep. Mark Meadows, R-N.C., has included it on a list of regulations Republicans should block early next year.
The government has created other incentives for hospitals to make sure their patient placements are good. For instance, Medicare cuts payments to hospitals when too many discharged patients return within a month.
“Hospitals didn’t use to care that much,” said David Grabowski, a professor of health care policy at Harvard Medical School. “They just wanted to get patients out. Now there’s a whole set of payment systems that reward hospitals for good discharges.”
But sometimes hospitals go too far in pushing patients toward their own nursing homes. In 2013, for instance, regulators faulted a Wisconsin hospital for not disclosing its ties when it referred patients to its own nursing home, which Medicare rated below average. In 2014, a family member told inspectors that a Massachusetts hospital had “steered and railroaded” her into sending a relative to a nursing home owned by the same health system.
Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.
The Lowest Rating
Medicare’s Nursing Home Compare gave the nursing home where Elizabeth Fee died one star out of five, meaning it was rated “much below average.” The hospital’s case managers told Fee’s family that the nursing home was merely an extension of the hospital and that “my mother would receive the same excellent quality of care and attention,” said Rees, her daughter.
But state inspectors found shortcomings in seven visits to the nursing home between August 2009 and October 2011, records show. Inspectors found expired medications during two visits and, at another, observed a nurse washing only her fingertips after putting an IV in a patient with a communicable infection.
Just four months before Fee arrived, inspectors cited the nursing home for not treating patients with dignity and respect and for failing to provide the best care. One patient told inspectors that her pain was so excruciating that she couldn’t sleep but that nurses and the doctor did not check to see whether her pain medications were working.
“Nobody listens to me,” the patient said. “I was born Catholic, and I know it’s not right to ask to die, but I want to die just to get rid of the pain.”
Fee ate little and had few bowel movements, according to the state health investigation. Fee’s family had hired a private nurse, Angela Cullen, to sit with her. Cullen became increasingly worried about Fee’s distended belly, according to Cullen’s affidavit taken as part of the lawsuit. She said her concerns were brushed off, with one nurse declining to check Fee’s abdomen by saying, “I do not have a stethoscope.”
On the morning of her death, an X-ray indicated Fee might have a bowel obstruction or other problem expelling stool, the inspectors’ report said. That evening, after throwing up a large quantity of matter that smelled of feces, she lost consciousness. She died of too much fluid and inhaled fecal matter in her lungs, the report said.
Bills Of More Than $150,000
In a court ruling, Judge Ernest Goldsmith of the San Francisco Superior Court wrote that Elizabeth Fee’s younger daughter, Nancy, “observed her mother drown in what appeared to be her own excrement.” Kathryn Meadows, the family’s attorney, said in a court filing that the nursing home’s bills exceeded $150,000 for the three-week stay.
Sutter Health, the nonprofit that owns the medical center and the nursing home, emphasized in court papers that Elizabeth Fee arrived at the facility with a low count of platelets that clot blood. Sutter’s expert witness argued that the near-daily visits from a physician that Fee received “far exceeds” what is expected in nursing home care.
The physician and his medical group have settled their part of the case and declined to comment or discuss the terms; the case against Sutter is pending. California’s public health department fined Sutter $2,000 for the violations, including for delaying 16 hours in telling the physician about Fee’s nausea, vomiting and swollen abdomen. Last year, Sutter closed the nursing home.
A week or so after Fee died, a letter addressed to her from California Pacific Medical Center arrived at her house. It read: “We would appreciate hearing about your level of satisfaction with the care you received on our Skilled Nursing Rehabilitation Unit, the unit from which you were just discharged.”
As President Donald Trump and Republicans in Congress devise a plan to replace the 2010 health law, new research suggests a key component of the law helped people with chronic disease get access to health care — though, the paper notes, it still fell short in meeting their medical needs.
Research published Monday in the Annals of Internal Medicine found that the number of chronically ill Americans with insurance increased by about 5 percentage points — around 4 million people — in 2014, the first year the law required Americans to have coverage, set up marketplaces for people to buy coverage and allowed for states to expand eligibility for Medicaid, the federal-state insurance plan for low-income people. If states opted into the Medicaid expansion, people with chronic illnesses such as heart disease, diabetes, depression and asthma were more likely to see those gains.
Still, the study suggests, the law fell short in terms of guaranteeing those people could get medical treatment, see a doctor and afford medications.
The study is the first to examine how the health law affected people with these long-term diseases, which require careful and continuous management, and whose treatment drives a vast majority of the nation’s health care costs. If these people don’t get regular treatment they are especially likely to wind up needing emergency care.
“This homes in on the patients that are most dependent on having coverage and access,” said Danny McCormick, an associate professor at Harvard Medical School and senior author on the study. “Most chronic conditions require ongoing treatment. And if you don’t get it, often it results in more expensive care downstream.”
As the GOP crafts its replacement plan, those findings could indicate what elements of the law are worth keeping, and what needs to be addressed. The Medicaid expansion in particular has come under heightened scrutiny from the GOP. This past weekend, a senior aide to President Donald Trump also said the administration wants to turn controlof the program over to states, which experts say could result in less funding.
The researchers say their findings suggest reversing the Medicaid expansion would pose significant problems for people with long-term illness.
They used data from the Behavioral Risk Factor Surveillance System — an annual survey jointly run by state health departments and the Centers for Disease Control and Prevention — to examine records for more than 600,000 adults with at least one chronic condition. Diseases included coronary artery disease, stroke, asthma, pulmonary disease, diabetes, depression and arthritis. They compared insurance rates in the three years and examined whether people used that insurance to see a doctor.
“There’s a clear difference between what happened for [chronically ill] individuals in states, based on how states implemented Medicaid. The Medicaid expansion was one of the strongest parts of the law,” McCormick said.
If policymakers are serious about using health dollars more efficiently, and getting better health outcomes, he added, the findings support including such an expansion in any new policy platform.
The paper builds on research suggesting people generally were more likely to get insurance if they lived in states that expanded Medicaid. States such as West Virginia, Illinois and Kentucky — which opted into the expansion — saw double-digit gains in coverage of chronically ill people.
“Medicaid expansion is one of the tools you would think of to help people with chronic conditions – and we are seeing more evidence this is the case,” said Benjamin Sommers, an associate professor of health policy and economics at Harvard’s public health school, who was not involved with this study. “The question of whether this informs [the policy] debate — it clearly should. It clearly should be relevant.”
That said, Obamacare was hardly a panacea, the researchers argue. Even after the law’s insurance changes, about 15 percent of people with chronic disease didn’t have coverage. More than one in four didn’t have a check-up in 2014. About 23 percent of people with chronic disease still had to go without doctors’ visits because of factors like cost. And those gaps were more pronounced for blacks and Hispanics. They were more likely on average to remain uninsured even after the health law took effect and to face obstacles in using new health insurance if they had it.
The paper suggests some possible causes: People didn’t understand how to use their insurance, or they had plans that required them to pay out of pocket large copays or deductibles — flat spending fees consumers have to front before coverage kicks in. Many marketplace plans were categorized as “high-deductible plans.”
“You’ve got hypertension or diabetes, and you have a very low income. It’s really hard to take your medications” without coverage and minimal cost-sharing, McCormick said. “Someone who’s insulin dependent who doesn’t get insulin? it’s going to result in an emergency room visit, or a hospital visit. There’s a large potential for downstream complications.”
But those gaps in coverage and access to care probably got smaller in the years following 2014, Sommers suggested. Other research has shown that with time, more people got insurance and learned how to use it.
“This is likely the tip of the iceberg in terms of what the Affordable Care Act was doing,” Sommers said. “It’s useful and part of a larger body of evidence making it clear access to care has improved among a range of populations.”
But, he noted, the findings do emphasize an important issue: The health law by itself did not expand health care to all Americans, or even all Americans with chronic conditions.
“The Affordable Care Act is not a universal coverage law. It’s a huge expansion for coverage but still left 20 to 30 million uninsured,” he said. “Even for those with coverage, some are still experiencing challenges.”
Trump has not yet offered his plan but said universal coverage will be part of his health care plan — although aides have since walked back on that claim. Meanwhile, an analysis this month by the nonpartisan Congressional Budget Office suggested that the repeal plan offered last year by Republicans eventually would increase the uninsured population by as many as 32 million.
Chronic illness is expensive; we all know that. Doctors, medications, skilled nursing, home enhancements, all of this has a cost. Sometimes it may seem easier, and the only option for you, the working caregiver, to just pay it out of pocket. My advice is that you should refrain from doing this as much as possible. The best way I can describe my reasoning is by likening it to the warning they give on airplanes; put your oxygen mask on first before attempting to help others. If you are incapacitated, you can’t help anybody.
The same principle applies to your finances. If your finances suffer, this maybe not only a hindrance to your future but to your ability to care for your loved one. Below is a list of a few things you will want to try to avoid if needed to dip into your own pocket:
Your retirement plans: This can have costly implications on the long term growth of that account and can really put your own retirement in peril. Typically, loans are tax free, however, if they are not paid within 5 years, it will be counted as taxable income. Also, some retirement plans do not allow loans, so if you take it as a withdrawal, it will count as taxable income as well as an additional 10% penalty and you will never be able to put that money back into the account.
Adding your parent as a dependent on your health insurance: I have heard of some success stories with this, however, I would not count on this. It may not even be necessary with the new healthcare exchanges and, if your parent is over the age of 65, they are eligible for Medicare.
Claiming your parent as a dependent for taxes: Claiming your parent on your taxes is allowable if you are provide at least one-half of their support. However, your parents income level has to be below the personal exemption amount (for 2016 is $4,050). If they are receiving any Social Security, this maybe a hard number to hit, so any tax benefits will be hard to come by.
Health Savings Accounts (HSA) and Flexible Savings Accounts (FSA): Both of these accounts are tax savings vehicles to help pay for medical expenses. Money from these accounts needs to be used for qualified medical expenses for the individual and their family. If they are used on a non-qualified expense or for a benefit not covered on the plan, they will be subject to income tax as well as an additional 20% penalty tax.
Being a family caregiver for someone living with chronic is a difficult task and using some of your assets to help with care may be inevitable. The saving grace is the political discourse seems to now be addressing this issue for family caregivers. There are a few bills presented to Congress to give some financial assistance to caregivers. Even President-Elect Trump has outlined tax incentives to assist the family caregiver. That being said, the gears of democracy grind slowly and until those bills or promises become law, you should try your best to protect your finances so you can survive the difficult task of caregiving for someone with chronic illness.
California officials have fined health care giant Kaiser Permanente $2.5 million for failing to turn over required data on patient care to the state’s Medicaid program.
The California Department of Health Care Services said this was the first fine imposed against one of its Medicaid managed care plans since at least 2000. The state relies on the data to help set rates, ensure adequate care is available and monitor how taxpayer dollars are being spent in the program, known as Medi-Cal in California.
Jennifer Kent, the department’s director, notified Kaiser of the sanctions in a Jan. 13 letterthat was obtained by California Healthline. The department later posted it online.
“This is the first time the department has sanctioned a health plan in recent history. The amount is significant,” said Sarah Brooks, deputy director of health care delivery systems at the Department of Health Care Services. “We do take it very seriously.”
Kaiser isn’t appealing the sanctions and the health plan said it’s “working toward compliance.” The company said the sanctions were in no way related to the quality of patient care or access to treatment. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
Brooks said her agency is in ongoing discussions with Kaiser and additional fines could be imposed depending on the company’s actions and whether Kaiser’s violations put the agency out of compliance with federal rules. That could force the state to repay money to the Centers for Medicare & Medicaid Services, which funds the Medi-Cal program jointly with the state.
Kaiser, the state’s dominant HMO, is among 22 health plans that participate in the Medi-Cal managed care program, which covers about 80 percent of Medi-Cal enrollees in the state.
The Oakland-based company failed to submit data on out-of-network care that Medi-Cal patients received from November 2014 to September 2016, according to the state. Kaiser also didn’t file data on “all physician-administered drugs” from March 2010 to March 2015, records show. That information is about infusions and other drugs given to patients in a doctor’s office or clinic.
The insurer missed a June 30 deadline to comply and a subsequent one Jan. 1, which triggered the current penalties. The fine related to medical claims was $742,500 and the drug data fine was $1.79 million, for a total of $2.5 million.
The reporting lapses are unusual since Kaiser pioneered use of electronic medical records and health data collection. But the company indicated in a statement that being an integrated health system that operates a health plan, its own hospitals and medical groups complicated matters.
Nathaniel Oubre, Kaiser Permanente’s vice president for Medi-Cal, said its systems and technology — including electronic health records — are focused on “quality, access and integration of care.”
But he said the systems were not designed or updated to collect information in the format required by the state.
“We are taking steps to change this,” he said. “We are making investments in technology that will facilitate compliance with the state’s data reporting requirements.”
Medi-Cal represents a small portion of Kaiser’s overall business, and some industry experts said the company may have been hesitant to alter its information technology systems to meet the state’s demands.
Kaiser said it serves about 700,000 Medi-Cal enrollees across the state. Rival Anthem Inc. serves more than 1 million Medi-Cal patients.
In Medi-Cal managed care, the state pays insurers a fixed amount per enrollee to provide comprehensive care. That’s different from the conventional fee-for-service system in which the state pays medical providers directly for services rendered.
In addition to being an insurer, Kaiser runs 38 hospitals across the country and hundreds of clinics. More than 18,000 salaried doctors work at its affiliated medical groups. Kaiser operates in eight states and the District of Columbia, but nearly 80 percent of its 10.6 million members are in California. For 2015, the company reported revenue of $60.7 billion and net income of $1.9 billion.
Kaiser has faced other stiff fines from California regulators. In 2013, the California Department of Managed Health Care fined the insurer $4 million for problems related to mental health treatment.
Two years later, the managed care agency criticized Kaiser again for failing to address the long delays in treatment for mental health patients.
Brooks said the state is rolling out a new ratings system for all Medi-Cal managed care plans next year that will track the quality of patient care, appeals processes, contract compliance and other performance measures.
Few people expect helping a family member to require them to become a bit of a tax expert, but many of us find ourselves navigating major financial decisions.
Your real estate attorney or financial advisor may not offer up information about the tax breaks you’re due as a family caregiver. Asking them if you qualify can save you thousands of dollars of taxes you don’t need to pay!
If you’re about to sell your home or the home of a family member because of their health, read this first and talk to your real estate lawyer and accountant.
We also have tips to share on how to get a home ready to sell. Many caregivers find themselves in charge of selling houses that haven’t gotten a face-life in a while and we need to get the best price for it that we can!
Many people are aware of the capital gains tax exclusion on your primary residence. If you’ve lived in your home for 2 out of the 5 years before you sell it, you don’t owe taxes on the first $250k of capital gains. If you’re married, that number jumps to $500k. That means if your home sells for more than what you bought it for, you don’t owe any taxes on the first $250k or $500k of profits.
Any money you spent increasing the value of the home –like an addition or upgrades, but not routine maintenance — counts toward the original price you paid. So, if you bought a home for $100k, spent $25k in renovations, and sold it for $250k, the IRS sees $125k as the price you paid for the home and you get $125k in tax-free profit.
If you own your home with someone you aren’t married to, you can each claim the $250k tax exemption, for a total of $500k, as long as you both qualify.
You can only use this capital gains tax exemption on your primary residence once in any two year period. However, this requirement is waived if you move twice in two years because of a change of employment, health, or other unforeseen circumstances.
This tax exempt status is incredibly important for everyday Americans who own their home. It helps families support themselves in retirement, pay for college, cover major health care expenses, and climb up the economic ladder.
What if you don’t meet the requirements?
There are many reasons why you may buy a home and have to sell it before you’ve lived in it for two full years. The IRS isn’t known for being a caring institution, but it does try to help family caregivers who need to move. That’s why they waive the requirements if you have to move because of a change of employment, health, or other unforeseen circumstances.
The IRS will grant you a reduced tax exclusion for quite a few caregiving related reasons.
You qualify for a reduced capital gains tax exemption if:
You can no longer afford to stay in your home because your caregiving has required you to cut back your hours, quit your job, or resulted in you losing your job.
If you’ve gotten a job transfer or taken a new job to be closer to a loved one who needs support. This generally needs to be more than 50 miles from your old home.
Your home is not suitable for a family member because of their disability.
A family member needs to move in with you for health reasons and your home is not large enough to accommodate them.
If you moved to be closer to a treatment facility for yourself or a family member.
If the climate of the area you lived was not suitable for a family member’s health.
Anyone in your household has passed away.
Anyone in your household has lost their source of income.
You and your spouse get divorced.
You’re forced to move because neighbors object to a family member’s mental or physical disabilities.
A family member requires a service animal and your condo prohibits animals.
A family member, in this case, is your spouse, any children or step-children who live with you, a co-owner of the home, anyone who lives with you, a parent or step-parent, grandparent, grandchild, sibling or step-sibling, your in-laws (including siblings), aunts or uncles, nieces or nephews, and cousins.
If you’re selling a family member’s home for them, they can qualify for a partial capital gains tax exclusion if:
They need to move into a residential care facility for physical or mental health reasons and have lived in their home for one full year.
They have become disabled and their home is not accessible.
Their neighbors object to their mental or physical health issues.
They can no longer afford their home because they’ve lost their income or their income has been reduced.
Someone in their household has passed away.
They’ve gotten divorced and can no longer afford their home.
They require a service animal and their condo prohibits animals.
You’ll want to get a letter from your doctor to support your need to sell the home in case you’re audited.
If the home owner requires residential care
If your spouse or another family member owns the home you live in, they can include any time they were living in a licensed assisted-care facility as part of the two years, as long as they lived in the home for a year in the 5 years before the sale. If your parent buys a home and lives in it for a year before having a health issue that requires you to place them in a nursing home, they can claim the tax exemption as long as you sell the home within 4 years of when they’re moved to residential care.
If your spouse has died
If you’re selling your home because your spouse has passed away, you can claim any period of time your spouse has owned and lived in the home as if you had lived there and owned it, too. So if you were married less than two years ago and moved into a home your new spouse had owned and lived in for more than two years, you can claim the full capital gains tax exclusion when you sell the home.
If you sell the home the year your spouse passed away, you can file your taxes jointly with your deceased spouse and claim the full $500k exclusion. If you wait and sell the home in a future year, you can only claim your $250k exclusion.
What’s the reduced exemption?
The reduced capital gains tax exemption on your primary residence is determined by a formula.
Maximum capital gains tax exclusion multiplied by the number of days divided by 730
The maximum exclusion is either $250k (if you’re single) or $500k (if you’re married).
The number of days is:
the number of days you owned the home and it was your primary residence
the number of days you used the home as your primary residence
the number of days between when you used the capital gains tax exclusion for a prior home sale and the date of the current sale
You use whichever of the three options is the fewest days.
730 is the number of days in two years.
Let’s say you and your spouse bought a home and a year and a half later, your sister-in-law is in an accident and needs your support. You and your spouse decide to sell your home and buy a new home that’s accessible for her needs. You’d be eligible for a partial capital gains tax exclusion. The math would look like this:
500,000 x 547.5 / 730
273,750,000 / 730
In this instance, you won’t owe taxes on the first $375k of proceeds from the sale of your home.
We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.
Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.
We’re not taking sides because there is no “other side.”
There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.
The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.
No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.
“We all have this idea of an eldercare Shangri-La, where our parents can live and have their every need taken care of,” said the book’s author, Chris Cooper. “We all think that this care home will be funded by the government and that we will be relieved of heart-wrenching caregiver decisions.”
Unfortunately, that place doesn’t exist, Cooper said.
“It’s the Shady Acres myth, and even if it did exist, most Americans couldn’t afford it since the government doesn’t generally cover expenses for long-term care.”
That leaves caretakers and caregivers with the decision-making for their loved ones. Eldercare Confidential was written for those caregivers and caretakers—the adult children and spouses thrust into the role of fiduciary—or steward—for loved ones. The decisions they have to make can be stressful—even debilitating, said Cooper.
“That’s why I wrote Eldercare Confidential. There’s no other book like it on the market. It outlines the six major issues confronting these caregivers and caretakers—what I call the Six-Headed Eldercare Beast.”
Those potential pitfalls range from money, medical and psychological mistakes, to social, environmental and legal mistakes.
Cooper knows how vital this information is from experience. As a professional fiduciary licensed with California, he works with seniors, disabled individuals and others who can’t manage their affairs on their own. He has seen the sometimes disastrous mistakes that people have made because they weren’t prepared for their new role of taking care of Mom and Dad.
“Forewarned is forearmed,” Cooper said. “I’ve given straight talk and practical guidance to navigate those challenges.”
Cooper said his entire career has been about advocating for those who can’t help themselves. In addition to being a professional fiduciary, he founded Eldercare Advocates, which provides geriatric care management and long-term-care consulting, as well as Chris Cooper & Company, an independent, fee-only Registered Advisory firm based in San Diego and Toledo. He is enrolled to represent clients before the IRS and in fair hearing processes before the Department of Health and Human Services at the state level.
“In short, I help people who really need someone to stand by them and support them. That has been my responsibility—and pleasure—my entire career,” he said. “I’m proud that I get to continue this mission with my new book.”
Chris Cooper is a professional fiduciary licensed with California and a national certified guardian with the Center for Guardianship Certification. As a professional fiduciary, Chris works with seniors, disabled individuals and others who can’t manage their affairs on their own. He is the founder of Eldercare Advocates, which provides geriatric care management and long-term-care consulting. Chris has established the fee-only financial planning firm Chris Cooper & Company in Toledo, Ohio, and San Diego. He regularly appears on both local and national news shows and is quoted in newspapers and magazines nationwide. For additional information, please visit his website at chriscooper.com.
When Cindy Hunter received her Medicare card in the mail last spring, she said she “didn’t know a lot about Medicare.” She and her husband, retired teachers who live in a Philadelphia suburb, decided she didn’t need it because she shared his retiree health insurance, which covered her treatment for ovarian cancer.
“We were so thankful we had good insurance,” she said. So she sent back the card, telling officials she would keep Medicare Part A, which is free for most older or disabled Americans and covers hospitalization, some nursing home stays and home health care. But she turned down Part B, which covers doctor visits and other outpatient care and comes with a monthly premium charge. A new Medicare card arrived that says she only has Part A.
When Stan Withers left a job at a medical device company to become vice president of a small start-up near Sacramento, Calif., he took his health insurance with him. Under a federal law known as COBRA, he paid the full cost to continue his coverage from his previous employer. A few years earlier, when he turned 65, he signed up for Medicare’s Part A. With the addition of a COBRA plan, he thought he didn’t need Medicare Part B.
Hunter and Withers now know they were wrong and are stuck with medical bills their insurance won’t cover. Hunter called it “an honest mistake” and said there was nothing in the written materials she and her husband received indicating that if they had Medicare Part A, his retiree coverage could not replace Medicare Part B. Withers had no idea he made a bad choice.
Thousands of seniors unwittingly make similar mistakes every year, believing that because they have some type of health insurance, they don’t have to worry about signing up for Medicare Part B. Generally, insurance other than that provided by a current employer will not exempt them from Medicare’s strict enrollment requirements. Seniors’ advocates and some members of Congress want to fix the problem, backed by a broad, unlikely group of unions, health insurers, patient organizations, health care providers and even eight former Medicare administrators.
Medicare’s Part B enrollment rules haven’t changed since the program was created in 1965. Seniors can enroll only when they first become eligible — usually three months before and after the month they turn 65 — or when their job-based insurance ends. If they miss this opportunity, they have to wait until the months of January through March to enroll and then coverage only begins July 1. Most won’t be allowed to buy any other health insurance policy during that time.
And if they delay signing up for 12 or more months after becoming eligible, many will be hit with a permanent penalty added to their Part B monthly premium. In 2014, about 750,000 beneficiaries paid late penalties, raising their Part B premiums an average of 29 percent, according to the Congressional Research Service.
“The rules have not changed, but our lives have,” said Joe Baker, president of the Medicare Rights Center, an advocacy group that is leading the effort to update the enrollment process. When Medicare began, the government wanted seniors, especially younger and healthier people, to sign up quickly and so the deadlines and late penalties were incentives to get them in the program.
But these days more seniors work past the Medicare eligibility age, get health insurance through their employer or their spouse’s, or have coverage through the health insurance marketplaces, Baker said. The problem isn’t that people are going without insurance. “The confusion that we really see is with how Medicare interacts with other insurance coverage,” he said.
Hunter, 62, became eligible for Medicare earlier than 65 because she gets Social Security disability benefits. She’s receiving two chemotherapy drugs to control a second reoccurrence of ovarian cancer. This fall her oncologist’s office told her there’s “something going on with your insurance,” she recalled. After many calls to her husband’s retiree plan, Social Security, Medicare and even her congressman, she learned that her insurance would only pay a share of the bills for her cancer treatment after deducting the amount the insurer said was Medicare’s responsibility. “But Medicare isn’t paying because I don’t have Part B,” she said. So Hunter is probably responsible for that portion.
Withers thought the health plan he purchased through his old employer would count as job-based coverage, but COBRA is not a substitute for Medicare Part B, a point no one mentioned when he submitted his paperwork. He should have signed up for Part B when he left his previous job.
“How could there be a rule that no one knows about?” Withers asked.
In addition, the private plan has refused to pay thousands of dollars in medical bills because the company argued that he should have had Part B and those are Medicare’s responsibility.
Confusion over COBRA is just one of many reasons that people miss their opportunity to enroll in Part B. Others think, incorrectly, that getting Veterans Health Administration benefits, job-based health insurance from a company with less than 20 workers, retiree coverage from a formeremployer, or coverage from the health law’s insurance marketplace exempts them from Part B’s lifetime late penalties and waiting periods with no insurance.
To help seniors avoid such mistakes, bipartisan legislation has been introduced in both the House and Senate that would allow people who miss their initial Part B enrollment deadline to sign up in the fall, when millions of seniors already in Medicare are choosing private drug or medical policies. Part B coverage would begin the month after they enroll, said Stacy Sanders, federal policy director at the Medicare Rights Center. It would also allow most people who enroll late to apply for retroactive coverage to their initial eligibility date and request a waiver of the late penalties if they can prove they were misled by an employer, health plan, insurance broker or state official (currently, an exemption may be based only on misinformation from a federal government representative).
“Because I didn’t ask Social Security and they didn’t give me the wrong information, there was nothing they could do,” Hunter said. “They said if they had given me the wrong information, they might be able to do something.”
Seniors “shouldn’t face penalties or gaps in their Part B coverage simply due to bureaucratic snafu,” said Rep. Patrick Meehan, R-Pa., who co-sponsored the House bill. “I’ve had seniors contact my office and say they simply had no idea of existing deadlines — or that they faced penalties down the road for missing them.”
The legislation also would require Medicare officials to notify all Americans prior to their 65th birthday about signing up for Medicare. Currently, the federal government and some states notify only those 64-year-olds who have health insurance though the Affordable Care Act’s marketplaces.
Although the bill appears unlikely to see action before the end of the current congressional session, Meehan said he will reintroduce it in 2017.
Getting an official government notice before turning 65 explaining when to sign up for Part B would “absolutely” help, said Withers. “There should be something that tells people what they need to do.”
Music plays a significant role in nearly everyone’s life, but for some people it represents much more than an invitation to dance or a soundtrack for the morning commute.
Researchers have found that music therapy provides a diversion from negative feelings and helps manage the pain of not only adults, but of children with developmental, physical, behavioral, and neurological disabilities.
It also increases range of motion and motor skills, and in some cases is a replacement for medication. In short, its therapeutic uses are many.
“Music is invaluable to people with special needs, allowing them to express themselves non-verbally,” says Travis Perry, a music teacher for more than 35 years and inventor of ChordBuddy, a device that makes guitar-learning easier for anyone – including those with disabilities.
“Veterans can use music to help cope with PTSD as well as other physical injuries. Senior citizens can learn to play the guitar, which helps build hand strength.”
One recent study showed that music therapy can even help children cope with routine immunizations, making them less stressed – and their parents less stressed as well.
While music therapy is known to be fruitful for the person needing therapy, the results also can be a gratifying for the teacher. Perry says he’s found it especially satisfying to teach the guitar to autistic children, who can be challenging but ultimately rewarding pupils.
In fact, a small number of people with autism are musical savants, according to the American Music Therapy Association, but all benefit from music therapy interventions to enhance their social, communicative and motor skills, among other needs.
Generally, children with autism aren’t able to make what would be considered a pleasing sound on the guitar without some assistance. Perry uses his invention to help them. Instead of positioning their hand into the correct chord positions – often tricky for even able-bodied learners – they can just press a tab that results in a clear, strong chord sound.
Perry, who has appeared on the popular TV show Shark Tank, didn’t actually have music therapy or people with special needs in mind when he invented ChordBuddy. He was trying to help his daughter learn to play and her frustration became his inspiration.
“When learning an instrument, it’s important to have success right away, and that can be difficult to do with the guitar,” Perry says. “Most people give up within the first couple of months and the guitar ends up in a closet. That’s why I’m so excited when I know I’ve been able to help a special-needs child, a veteran with PTSD or a senior citizen with arthritis make music.
“You realize the odds they’ve had to overcome, both with the usual hurdles to learning and their personal difficulties, and that’s very fulfilling to me.”
Travis Perry has been a music teacher for more than 35 years and is the inventor of ChordBuddy. His invention was showcased on ABC’s Shark Tank. He regularly makes appearances and speaking engagements at schools, and donated his invention to various charities including The Wounded Warriors Project.
Doctors have complained for years that they’re not paid adequately for time-consuming work associated with managing care for seriously ill older patients: consulting with other specialists, talking to families and caregivers, interacting with pharmacists and more.
Under the new rules, physicians will be compensated for legwork involved in working in teams — including nurses, social workers and psychiatrists — to improve care for seniors with illnesses such as diabetes, heart failure and hypertension.
Care coordination for these “high need” patients will be rewarded, as will efforts to ensure that seniors receive effective treatments for conditions such as anxiety or depression.
Comprehensive evaluations of older adults with suspected cognitive impairment will get a lift from new payments tied to the standards that physicians now will be required to follow.
The new Medicare policies reflect heightened attention to the costliest patients in the health care system — mostly older adults who have multiple chronic conditions that put them at risk of disability, hospitalization, and an earlier-than-expected death. Altogether, 10 percent of patients account for 65 percent of the nation’s health spending.
It remains to be seen how many physicians will embrace the services that the government will now reimburse. Organizations that advocated for the new payment policies hope they’ll make primary care and geriatrics more attractive areas of practice in the years ahead.
Here’s a look at what is entailed:
Complex Chronic Care Management
Two years ago, Medicare began paying nurses, social workers and medical assistants to coordinate care for seniors with two or more serious chronic conditions. But low reimbursement and burdensome requirements discouraged most medical practices from taking this on.
New payments for “complex chronic care management” are more generous (an average $93.67 for the first hour, $47.01 for each half hour thereafter) and can be billed more often, making them more attractive.
They’ll cover services such as managing seniors’ transitions from the hospital back home or to a rehabilitation center, coordinating home-based services, connecting patients with resources, and educating caregivers about their conditions.
Many practices will be able to hire care managers with this new financial support, said Dr. Peter Hollmann, secretary of the American Geriatrics Society and chief medical officer of University Medicine, a medical group practice associated with Brown University’s medical school.
To illustrate the benefits, he tells of a recent patient, with diabetes, hypertension and heart failure who was retaining fluid and had poorly controlled blood sugar. After a care manager began calling the 72-year-old man every few days, asking if he was checking his blood sugar or gaining weight, Hoffmann adjusted doses of insulin and diuretics.
“The patient remained at home and he’s doing well, and we likely prevented a hospitalization,” Hoffmann said.
Cognitive Impairment Assessment
Making a dementia diagnosis is difficult, and primary care physicians often fail to do so on a timely basis. But new Medicare policies may help change that by specifying what cognitive examinations should entail and offering enhanced payments.
Physicians who conduct these evaluations are now expected to meet 10 requirements. In addition to performing a careful physical exam and taking a detailed history, they need to assess an older adult’s ability to perform activities of daily living, their safety, behavioral and neuropsychiatric symptoms, and caregivers’ knowledge, needs and abilities.
All the medications the senior is taking should be evaluated, and standardized tests used to assess cognition. Efforts to elicit the patient’s goals and values need to occur in the context of advance planning, and a care plan must be crafted and shared with caregivers.
Medicare will pay $238.30 for the initial assessment and additional fees for creating a care plan and performing care management.
“Hopefully, this will kick start the development of practices that provide these dementia-related services,” said Dr. Robert Zorowitz, senior medical director at OptumCare CarePlus, a managed Medicare long-term care program in New York City.
Care Between Patient Visits
Until now, the rule has been: if the doctor is with a patient, he can bill for his time. But if he takes home medical records to review at night or talks by phone with a caregiver who’s concerned about her elderly mother, that time goes unpaid.
That will change next year: Medicare will begin paying $113.41 for the first hour spent in these kind of activities and $54.55 for every subsequent half hour.
For the first time, “this recognizes the significant and valuable services that physicians perform in between face-to-face visits,” said Dr. Phillip Rodgers, co-chair of the public policy committee at the American Academy of Hospice and Palliative Medicine.
Physicians will also get extra reimbursement for extra time they spend in person with complex patients or their caregivers.
Dr. Paul Tatum, an associate professor of clinical family and community medicine at the University of Missouri School of Medicine recently scheduled a half hour for a patient in his mid-70s with high blood pressure, kidney disease, skin issues and cognitive impairment. But the visit ran to 90 minutes when it became clear the gentleman was more confused than ever, falling, not eating well, not taking medications, and needed more help.
“Much of what we did for this patient fits in the new Medicare codes, which recognize the extent of what’s needed to care for people with complex illnesses,” the doctor said.
Integrating Behavior Health
Research has shown the seniors with depression — a frequent complication of serious illness — benefit when primary care physicians collaborate with psychologists or psychiatrists and care managers track their progress.
Now, Medicare will begin paying $142.84 for the first 70 minutes that physicians and behavioral health providers work together, $126.33 for the next hour, and $66.04 per half hour for a care manager who stays in touch with patients and tracks whether they’re improving.
Care managers may work on site or off; psychologists and psychiatrists will be called for consultations, as needed.
“Accessing mental health services is a really big problem for my patients, and having professionals ready to work with me and compensated to do so will be extraordinarily valuable,” said Rodgers of the hospice and palliative medicine academy.
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
President Donald Trump’s administration made explicit this weekend its commitment to an old GOP strategy for managing Medicaid, the federal-state insurance plan that covers low-income people — turning control of the program to states and capping what the federal government spends on it each year.
It’s called “block granting.” Right now, Medicaid, which was expanded under the 2010 health law to insure more people, covers almost 75 million adults and children. Because it is an entitlement, everyone who qualifies is guaranteed coverage and states and the federal government combine funds to cover the costs. Conservatives have long argued the program would be more efficient if states got a lump sum from the federal government and then managed the program as they saw fit. But others say that would mean less funding for the program —eventually translating into greater challenges in getting care for low-income people.
Block granting Medicaid is a centerpiece of health proposals supported by House Speaker Paul Ryan and Rep. Tom Price, Trump’s nominee to run the Department of Health and Human Services. This weekend, Trump adviser Kellyanne Conway emphasized the strategy as key to the administration’s health policy.
But what would this look like, and why is it so controversial? Let’s break down how this policy could play out, and its implications — both for government spending and for accessing care.
Q: How would a block grant work?
So far, Trump hasn’t released details on his particular plan. But the basic idea is that states would get fixed federal grants that would be based on the state and federal Medicaid spending in that state. The grant would grow slightly each year to account for inflation. However, the inflation adjustments are expected to be less than the medical inflation rate.
Currently, states share the cost of Medicaid with the federal government. Poorer states pay less: In Mississippi, for instance, the federal government pays about three-fourths the cost of the program, compared to 50 percent in Massachusetts.
The federal funding is open-ended, but in return, states must cover certain services and people — for instance, children, pregnant women who meet income criteria and parents with dependent children. Under a block grant, states would have more freedom to decide who qualifies, and for what services.
How much freedom states will have will depend. Many proposals loosen state coverage requirements, which could mean that if states opted to cap enrollment, for example, people who are technically eligible might not get coverage, noted Edwin Park, vice president for health policy at the left-leaning Center for Budget and Policy Priorities in Washington, D.C.
“It’s going to be up to the specifics of any block grant proposal looking at legally, whether there would be certain benefits states would have to provide,” Park said. “Usually states are given unfettered flexibility, or near unfettered flexibility.”
Q: Is this the same thing as a “per capita cap”?
The block grant differs slightly from that other conservative favorite. Per capita caps have also been endorsed by Ryan. Under those, states also get a fixed amount of money each year, but that sum is calculated based on how many people are in the program. Since block grants aren’t based on individual enrollment each year, the state wouldn’t necessarily get more money to compensate if, say, more people qualified for Medicaid because of an economic downturn. In theory, a per capita caps system would increase funding. But if, say, an expensive new drug entered the market, or a costly new disease emerged, the Medicaid budgets still wouldn’t change to reflect that, Park noted.
Q: It seems like both Democrats and Republicans are pretty fired up about this. Why is this such a big deal?
The block grant system is a radical shift from how Medicaid has worked previously. Republicans say it could save the government billions of dollars. But other analysts note those savings could limit access to health care if the funding becomes squeezed. Thanks to the 2010 health law, which led states to expand Medicaid eligibility, more people would face the brunt of those cuts.
The fiscal impact: The non-partisan Congressional Budget Office estimates recent Republican block grant proposals could cut Medicaid spending by as much as a third over the next decade. The cuts would start small, growing larger over the years.
Many Republicans say that, because states will have greater flexibility, they can innovate with their Medicaid programs.
But opponents note that experimentation alone won’t make up for smaller budgets. The fixed grants could mean states cut benefits or force beneficiaries to take on more cost-sharing, for instance.
Some federal requirements are necessary, said Tom Miller, a resident fellow at the conservative American Enterprise Institute. Block granting could “be great or a disaster,” he said, depending on how it’s implemented. “The ideal model from the view of states is, ‘Give us the money, and I’ll let you know what I did.’ That’s not going to work,” he said.
The potential impact is significant. More than 10 million who got insurance through Obamacare are on Medicaid and could be affected. That’s also why some Republican governors — particularly in states that embraced the health law’s Medicaid expansion — have joined their Democrat peers in expressing qualms.
Q: You say this is an “old GOP idea.” How old?
This dates back at least until the 1980s. President Ronald Reagan pushed Medicaid block grants in 1981, House Speaker Newt Gingrich in 1995 and President George W. Bush in 2003.
Gingrich’s plan came closest — it passed through Congress but failed to garner approval from then-President Bill Clinton. He eventually consented to block grant welfare, resulting in the Temporary Assistance for Needy Families program.
Q: I don’t get my insurance through Medicaid. So why should I care?
Medicaid is a major government program. In 2015, it accounted for 17 percent of the nation’s health care expenditures — money that comes from taxpayer dollars.
Plus, the 75 million people covered make up almost a quarter of the U.S. population. And almost two-thirds of people in nursing homes pay for their care using Medicaid — indeed, most of the program’s spending is on the elderly and disabled. If lawmakers are trying to save $1 trillion over a decade, it’s hard to see how that could happen without touching elderly benefits, noted Matt Salo, executive director of the National Association of Medicaid Directors.
Even if you aren’t covered by Medicaid, you probably know someone who would be affected by block granting.
Revamping Medicaid could also affect what services hospitals provide, and their economic strength. Specifically, hospitals and clinics that treat large numbers of Medicaid beneficiaries may have to rethink their budgets, what services they can provide and how many people they can employ. That matters from a health care standpoint, but also a jobs one — hospitals are often large community employers.
Finally, the debate could also set the tone for how Congress treats other so-called “entitlement programs,” such as Medicare and Social Security. The CBO estimates that, barring any meaningful change, spending on Social Security and other health programs will account for about 16 percent of all the country’s yearly goods and services — the gross domestic product — by 2046. A successful change in Medicaid could pave the way for similar changes in other programs.
Q: What are the odds this actually happens?
Now that the GOP has control over Congress and the White House, Republicans have made health care a top priority, including provisions in the new budget to repeal Obamacare, for instance.
Large portions of a block grant proposal could be achieved through budgetary reconciliation, both Park and Miller said. That means it could pass without Democrat support, even in the Senate, since it would only require 51 votes.
But without more specifics, any assessment of the consequences is, at best, informed speculation.
“What does a block grant mean in terms of rules? … No one’s ever gotten far enough to say, ‘Here’s what this actually means,’” Salo said. “This is uncharted territory for a lot of us.”
KHN Senior Correspondent Mary Agnes Carey contributed to this article.
This story was updated to correct a reference to a CBO report on spending. CBO estimates that spending on Social Security and health programs will account for about 16 percent of the yearly U.S. gross domestic product by 2046, not 16 percent of federal spending.
One benefit of the increasing life expectancies for Americans is that more people have bonus years for enjoying the company of their aging parents.
But all is not rosy. Those extended years also boost the odds that parents could go broke or suffer from dementia and be unable to make financial decisions for themselves.
That can leave adult children perplexed about when and whether they should step in and find out what’s happening with their parents’ money, says Carolyn Rosenblatt, a registered nurse and elder law attorney.
“Some stubborn parents just refuse to talk about their money. No matter what their adult children say to them, they put it off, change the subject or tell their children it’s none of their business.”
Of course, many adult children aren’t in any particular hurry to broach the subject either, says Davis, a clinical psychologist and gerontologist.
“They have their own discomfort about it and procrastinate,” he says. “Then a crisis comes up and no one has any idea what the parents have or where to find important documents.”
But Rosenblatt and Davis say it’s critical that these conversations take place so that the offspring can gather information about such subjects as the parent’s income and expenses, where legal documents are kept, and what kind of medical or long-term-care insurance the parent might have.
The success of these conversations often comes down to how you approach the subject, Rosenblatt and Davis say. They offer a few tips:
End the procrastination by picking a date for the talk.
Make an appointment with yourself to bring up the subject at a specific time. An opportune time to schedule this is after a birthday, a family event or a holiday where other family members are together who may share in the responsibility for the aging parents in the future.
Tell your parents you understand and respect their reluctance to discuss their finances. You can even make the conversation about yourself rather than about them. Say that you’re concerned that if something went wrong, you would be completely lost as to how to help them.
Address their fears head-on.
Let them know you understand they are worried that if they talk about their finances their independence might be taken away. You might add that you want them to maintain their independence as long as possible and you’re willing to help accomplish that, but you can’t do it without the correct information.
“Getting past an aging parent’s fear about talking about finances can be daunting,” Rosenblatt says. “But a well-planned strategy for approaching the subject will give you your best chance.”
Carolyn Rosenblatt and Dr. Mikol Davis are co-authors of The Family Guide to Aging Parents (www.agingparents.com) and Succeed With Senior Clients: A Financial Advisors Guide To Best Practices. Rosenblatt, a registered nurse and elder law attorney, has more than 45 years combined experience in her professions. She has been quoted in the New York Times, Wall Street Journal, Money magazine and many other publications. Davis, a clinical psychologist and gerontologist, has more than 44 years experience as a mental health provider. In addition to serving his patients, Davis creates online courses and products to assist professionals and the public with understanding aging issues. Rosenblatt and Davis have been married for 34 years.
Caregivers can be tough to shop for! When you’re busy taking care of everyone else, there’s hardly any time left for hobbies.
The best way to brighten a caregiver’s day is always going to be taking something off of our to-do list for us. Having an afternoon off from running errands or a little time to ourselves is always appreciated.
It’s hard to wrap “stopping by the pharmacy” or “an afternoon with grandma,” so here are a few ideas you can hand over…
For when you’re not there to say it in person…
For someone who needs a boost…
For someone you really care about…
For the caregiver who doesn’t ask for help…
For when you wish you were there to help in-person…
For the impeccably organized caregiver…
For the caregiver who doesn’t have the time for a break…
For someone who doesn’t want to hear they should take care of themselves…
It took a lot of convincing for John Evard to go to rehab. Seven days into his stay at the Las Vegas Recovery Center, the nausea and aching muscles of opioid withdrawal were finally beginning to fade.
“Any sweats?” a nurse asked him as she adjusted his blood pressure cuff. “Last night it was really bad, but not since I got up,” replied Evard, 70, explaining that he’d awakened several times with his sheets drenched.
Even for him, it was hard to understand how he ended up 300 miles away from his home in Scottsdale, Ariz., at this bucolic facility in the suburbs of Vegas. “This is the absolute first time I ever had anything close to addiction,” he said. He prefers to use the term “complex dependence” to describe his situation: “It was, shall we say, a big surprise when it happened to me.”
As the nation grapples with a devastating opioid epidemic, concerns have primarily focused on young people buying drugs on the street. But America’s elderly also have a problem. Over the past several decades, physicians have increasingly prescribed seniors pain medications to address chronic pain from arthritis, cancer, neurological diseases and other illnesses that become more common in later life.
A recent study found that in 2011, 15 percent of seniors were prescribed an opioid when they were discharged from the hospital; three months later, 42 percent were still taking the pain medicine.
One in three Americans who have taken prescription opioids for at least two months say they became addicted to or physically dependent on the medications, according to a recent Washington Post-Kaiser Family Foundation poll. (KHN is an editorially independent program of the foundation.)
It’s no surprise, then, that some seniors end up addicted.
Evard spent his life working as a corporate tax attorney. He’s spry and white haired, with a contagious grin. A few years ago he and his wife retired to Arizona with their eyes on the golf course. The dream didn’t last long. Just months later, a virus infected Evard’s left ear. Overnight, he lost half his hearing and was left with chronic pain. In January, he had surgery to fix the problem.
“From the surgeon’s standpoint, the operation was successful. The problem was, the pain didn’t go down. It went up,” he recalled.
His doctors prescribed opioids, including Oxycontin. “They decreased the pain, particularly at first,” said Evard. “As time went on they had less and less effect, and I had to take more and more.”
As the doctors increased his dosage, Evard’s once active life fell apart. He was confused, depressed, and still in pain. “I was effectively housebound. I couldn’t play golf anymore. I couldn’t go to social events with my friends or my wife.”
He couldn’t think of anything except the pills and when he could have the next one. He knew he was in trouble — despite having taken them exactly as his doctor instructed.
“I was a rule-follower,” he said. “And I still ended up, in a mess!”
In 2009, the American Geriatric Society came out strongly in favor of opioids, recommending that seniors with moderate to severe pain be considered for opioid therapy. The panel cited evidence that seniors were less likely than others to become addicted.
“You don’t see people in this age group stealing a car to get their next dose,” Dr. Bruce Ferrell, chairman of the panel that issued the Society’s guidelines, told The New York Times at the time.
Mel Pohl, medical director of the Las Vegas Recovery Center, called that conclusion a “horrible misconception.”
“There’s no factual, scientific basis for that. The drug takes over in the brain. It doesn’t matter how old the brain is.”
The problem is that chronic pain is common as people age, and there aren’t many good options to treat it. Even aspirin and ibuprofen carry bleeding risks. The 2009 AGS guidelines are no longer in use, but opioid medications remain a crucial tool to treat pain in older people. Most people are able to take opioids in small doses for short periods of time without a problem.
“We really don’t use opioids necessarily as the first line of treatment because we understand what the risks are. But we also don’t want to see our patients suffering needlessly if we can provide them with relief,” said Dr. Sharon Brangman, past president of the AGS. The trick, she said, is to try non-pharmacological options such as acupuncture first and to use the smallest effective opioid dose possible, if necessary.
Still, most of the seniors at the Las Vegas Recovery Center have taken the drugs as prescribed by a willing doctor trying to address their pain, said Pohl. That pattern sets them apart from many of the younger patients, many of whom start buying drugs on the black market after being turned away by physicians.
Nonetheless, in the past 20 years, the rate of hospitalization among seniors that is related to opioid overuse has quintupled. But relatively few of them end up in rehab. Pohl said that’s due to a combination of factors.
“They’ve grown up in an era where drug addiction and alcoholism [were] evil, and I think that’s internalized for some of the folks that I’ve seen,” he said, so they don’t seek help, particularly from an in-patient facility. Also, some rehabs not are equipped to deal with the complex medical problems common among older people.
Another problem are patients whose addictions have been misdiagnosed as dementia. “We’ll have a family come [visit], three weeks into treatment, and it’s like ‘Oh my God, you’re back! I haven’t seen that glimmer in your eye in 20 years!’” said Pohl.
It took John Evard about a week to get over the vomiting and flu-like symptoms of detox, which can be particularly hard on older patients. He’s speaking out now because he doesn’t want other seniors to fall into the same trap.
“Don’t just take the prescription because it’s part of the checkout process from the hospital,” he cautioned. “It’s your body, take charge of it, and push for alternatives at all costs. And if you do go on, get off them as fast as you can.”