It’s a question I’m asked all the time by family caregivers:
Can I get paid to be a family caregiver?
It’s usually accompanied by qualifiers:
- I’m not trying to be greedy, but I had to quit my job to take care of my mom.
- My husband isn’t comfortable having a stranger take care of him.
- My insurance will pay for someone to take care of my disabled sister and I’m a trained medical assistant – can’t they just pay me?
Family caregivers often spend a large portion of their income – not to mention their savings – to care for their loved ones. You might even be taking unpaid leave or feel forced to quit your job to fulfill your family obligations. Family caregivers who quit their jobs lose out not only on a paycheck, but on retirement plans, pension plans, and social security benefits. Family caregivers are saving insurance companies and government agencies billions of dollars by providing care – shouldn’t there be a way to get paid something?
Unfortunately, there are only a few programs that will pay family caregivers. We know how hard you work and how much you deserve financial support, but most of the time it is not possible to be paid to be a family caregiver. Because health care differs so much, I can’t provide specific information. However, I can point you in the right direction to find some answers.
Government programs to pay caregivers
Each state and county provides different services for the Administration on Aging. Some programs will provide stipends, reimburse caregivers for supplies, offer training, and provide respite. Paying for Senior Care maintains a list of Area Agencies on Aging and Disability Resource Centers that’s searchable by state and county.
Guardians of children
Guardians of disabled children who are not their biological or adopted children can become subsidized guardians. This allows relatives to receive financial help to care for children and keep them out of foster care.
Structured Family Caregiving
In some states, family caregivers of Medicaid recipients can be paid through the Structured Family Caregiving program. In order to participate, you must be referred by your local Agency on Aging, which is typically run at the county level. The program is run by Caregiver Homes. Caregiver Homes is available in Connecticut, Massachusetts, Rhode Island, Ohio, and Indiana, and will be in other states soon.
- The person receiving care must be eligible for Medicaid and deficient in at least 3 of 5 activities of daily living: dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed.
- Caregivers and patients must live together.
- Stipends typically range between $900 and $1,200 a month, depending on the level of care.
- You will be assigned a registered nurse and a care manager who will meet with the caregiver and patient to develop a care plan and will provide ongoing coaching, training, and other support.
Medicaid varies by state, so contact your local Medicaid office to find out if you may qualify. If your Medicaid office isn’t responsive, the National Resource Center for Participant-Directed Services can help connect you to the state programs that allow the patient to decide how to spend their health care money – sometimes including the option to pay a family member for care.
Unfortunately, Medicare does not pay for in-home care or adult day services.
Private sources of support for family caregivers
Disease or condition specific organizations
Some private organizations will provide stipends or grants to support caregivers. Organizations who offer this each have their own requirements, so contact a social worker to find out more.
Sometimes parents will recognize the financial hardship their care causes family members and will pay their family members to care for them. This may take the form of an adjustment in the amount of inheritance or some other creative reimbursement. Sometimes relatives will pool their money to pay the primary family caregiver. It’s wise to write a caregiver contract and check with an elder care benefits planner or elder law attorney if you decide to go this route, as it can have implications on Medicaid eligibility, taxes, and inheritance.
There’s also the possibility that family members could share the cost of caregiving, so it’s not all falling on one person.
It’s important to make sure family members are in agreement. Finances can bring out the worst in families, especially during stressful times. You may consider family mediation services – the National Academy of Elder Law Attorneys can help you if you’re caring for an aging relative.
Long-term care insurance
Certain types of long-term care insurance will pay for in-home assistance, including family caregivers. These types of policies are relatively unusual and most exclude people who live in the same household from being paid. These types of plans tend to be significantly more expensive. Talk to your insurance agent to learn more.
What if none of these programs will help you?
Even if you can’t get paid to serve as a family caregiver, you may be eligible for programs that will cover adult day services, in-home support, or other ways to ease the financial burden.
Department of Welfare
Caregivers may qualify for other programs, including cash assistance, food subsidies, and medical assistance. Check with your state welfare office for more information.
Resources for those over 55
The National Council on Aging can help you find out if your loved one is eligible for financial assistance for medication, housing costs, and health care. Get started with their Benefits Checkup.
Social service organizations
There are numerous organizations that provide grants or emergency assistance to families. Many of these are specific to location, employment history, and condition. Organizations will provide grants for rent, mortgages, and utilities. Other organizations provide support for food, medication, supplies, and grants for home modifications to meet the needs of people with disabilities. Each agency has its own eligibility requirements, so you will need to search online by specific needs, contact a local social worker, or discuss it with hospital staff.
If you’re caring for a relative and provide for more than half of their basic living expenses, you may be able to claim them as a dependent on your taxes. You may also be able to deduct their medical expenses, even if you can’t claim them as dependents. Visit the IRS website or call the IRS help-line at 800-829-1040. You can also talk to an accountant about these options.
Working while serving as a caregiver
Some companies are more caregiver-friendly than others. Your company may allow you to work part-time, have flexible hours, work from home, or provide additional time off. Or they may not.
Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks of unpaid leave per year. Some companies even have employee assistance programs. Check your employee handbook to see if your company has set policies. Go over the options with your supervisor and HR before you make any big decisions.
Getting help is possible
It isn’t easy and it isn’t enough, but help is out there. Find out where other caregivers have found help and how it turned out.
Do you use one of these programs? Have you tried to enroll? Is there another program we should know about? Please let us know in the comments.
This article was originally published in September 2014. It’s been updated several times in order to reflect changes to available caregiver support programs.
In the United States, there are an estimated 1.4 million caregiving youth (children under the age of 18), and nearly 10 million Millennial caregivers (aged 18-34 years old). Of the millions of young caregivers, I believe every single one is an advocate. Advocacy means that you speak up for another person’s needs, views, and try to help them get support. As caregivers, advocacy is a way of life. You may speak to health or social care professionals on behalf of your family member, coordinate service care delivery, oversee your family member’s medication administration, and manage your family’s household. You are the expert on your family member’s care.
While you are well-versed in advocating for your family, you may find speaking up for yourself more difficult to do. As a young caregiver, self-advocacy can present its own set of unique challenges.
What are barriers to self-advocacy?
Lack of awareness in society & unsupportive environments: Unfortunately, many people do not yet recognize the vital role young caregivers play in our society. This lack of awareness often means that people do not understand your caring role and how it can impact all parts of your life. Society also tends to overlook and disregard the experiences of young people with caregiving responsibilities, and health professionals may not view you as a “caregiver” because of your youth.
Fear of mistreatment & associated stigma: You may stay quiet about your caring role because you don’t want well-intentioned professors, bosses, or friends to worry over you and treat you differently than everyone else. At work, your supervisor or co-workers may not understand your life as a caregiver, and you may might fear losing your job. If you provide care for someone with a socially stigmatized condition, e.g., mental illness, visible physical disabilities, or HIV-AIDS, you may fear that by speaking out as a caregiver, you will also “out” the condition of the person you care for.
No support available: In some situations, those around may already know that something is “up”, because of late or missed days at school or work. Conversely, you may be very open about caregiving. In such scenarios, people are aware of your caring role, but you find that there is little or no support available to you as a young caregiver. Supportive services may be directed towards your family member, rather than you, the caregiver.
What are ways to self-advocate?
Despite its challenges, the act of speaking up for yourself is impactful and meaningful. Every time you engage in self-advocacy, you continue to spread awareness about young caregivers. Even in the seemingly small moments, your words and actions demonstrate to society that young caregivers exist and matter.
Express your needs and desires within your family: To combat potential feelings of resentment, it is important to keep the lines of communication open in your family. You may want to engage in family group conferences to discuss current and future care plans. If you foresee sharing or shifting caregiving tasks to younger siblings, you’ll want to discuss with them the practicalities of the caring role and what this will mean for everyone in the family.
Inform doctors, nurses, and other health care professionals that you are a critical participant in your family member’s care, and express your desire to be involved in discussions.
Tell professors, administrators, work supervisors, and friends about your caring role and the ways it impacts your life. This may mean requesting a “grace period” to submit assignments, asking for flexible schedules and work hours, requesting to keep your cell phone turned on and kept with you, in case your family member needs to reach you in an emergency, etc. Self-advocacy in the workplace also means knowing your legal rights, so that you may be aware of potential issues of workplace discrimination.
Ask for help: Seek out extended family members, neighbors, or friends to help with caregiving tasks, or to give you a bit of respite. You may also wish to contact supportive organizations for help.
Monitor your own mental health and well-being: Take breaks (even just for a few minutes), practice self-care, exercise, and maintain a healthy diet. Keep up to date with your own doctor’s appointments and annual tests. You may wish to attend support groups and/or seek out a mental health professional if needed.
Get involved: Call or write your government representatives and vote. Use technology and social media to your advantage: there are several online caregiver support groups on Facebook and Twitter, and they can be a great way to meet other caregivers, ask advice, or vent! You could start a blog about your experience as a young caregiver or post videos to YouTube. You may also want to share your caregiving story through participation in caregiver research studies; this can be an impactful way to help other caregivers on a wider scale!
Remain encouraged as you seek to advocate for yourself. You serve an irreplaceable role in our society and you deserve recognition and support!
Can you think of other ways to self-advocate? How have you advocated for yourself and did you find it helpful? Please share your comments/suggestions below.
This article was originally published on the website of Christine M. Valentin, licensed clinical social worker, and may be accessed here.
How to conduct discussion about mortality can be the greatest challenge in a health-care provider’s career. My new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is a guide for professionals, families and patients when faced with poor prognosis and the need to talk about chronic and end-of-life issues. After 27 years of practice in palliative care, I have gained valuable knowledge and unique insights and how to best address these concerns. Since I can’t personally talk to everyone, I’ve written this book—to give all the same information that I give to those that personally contact me. Chapter 14, Difficult Treatment Decisions and Discussions speaks to culture, religion and other traditions that must be handled mindfully when working with aging patients.
Serious illness doesn’t discriminate; it strikes patients of all ethnic and cultural backgrounds. Members of particular groups frequently have traditions that govern how they deal with serious illness, dying, and death.
In today’s Western cultures, the wishes of seriously ill people are paramount. Our laws and institutions are geared to see that their directives are carried out. In other cultures, decisions are based on what’s best for the family and the individual’s interests are less important. The patient’s family, not the patient, is expected to make the important decisions including treatment and end-of-life decisions.
If you want your family to make those decisions, make your wishes clear. Put them in writing. Make sure that they’re in your medical record. Tell your family, friends, and medical providers that you authorize your family to make all the necessary decisions regarding your treatment and end-of-life.
When it comes to cultural differences, my major concern is that assumptions will be made that don’t reflect patients’ wishes.
I was treating Mae, a Chinese-American patient in the ICU when it became clear that she had only a matter of days left. I asked her nurse, who was also Chinese-American, if she knew whether anyone had asked about Mae’s spiritual preferences. Did she want to see a spiritual leader or have particular customs followed? “Oh, no,” the nurse replied, “We Chinese aren’t religious.” Her answer surprised me. It was not what I had experienced. So I asked Mae’s family, learned that they were Catholic, and was told that both Mae and her family wanted her to receive the Sacrament of the Sick, which we soon arranged
You can’t assume that you know about someone because you know their ethnicity, country of origin, religion, or primary language. You certainly don’t know their preferences for something as personal as medical care and spiritual needs at the end of life.
Although cultural traditions play a role in making treatment decisions, that role is not absolute. For example, in some cultures the tradition is to withhold unfavorable information from patients. In those cultures physicians don’t discuss diagnosis and prognosis directly with the patient. And yet, cultures are not homogeneous. Opinions diverge even in the most traditional communities. They are never 100% one way or the other. Ultimately, treatment and end-of-life decisions are personal and vary with each case.
I tell my students to be curious. To ask respectful questions like, “What do I need to know about your culture or religion to make sure I take good care of you?” Share these traditions and practices with your doctors and nurses. If the person who is ill in your family is potentially more traditional than you are, you can ask them the same question- “Grandma, what are the traditions in our family that are important when taking care of people who are sick?” This question about traditions is another opportunity for the person who is sick to find meaning, purpose, legacy and dignity by sharing family and cultural traditions.
On the other hand, I sometimes find that people don’t want straight talk. Some people prefer to be a bit in the dark, to live with some denial. That’s OK, too. The point is that you can never know what someone will say. That goes for me as a doctor and for family members. The goal is not to assume what someone wants, but to ask.
At 84, Mr. Wong, was admitted to the hospital with right-sided abdominal pain. An ultrasound revealed a mass in his gall bladder that looked like cancer. His family told us not to tell him what we found because he wouldn’t be able to take such bad news. They said that in their tradition the family would make all medical decisions for him.
One morning, when Mr. Wong was feeling better, I visited him. He was in bed and a Mandarin interpreter was with his family in her room. I wanted to respect the family’s wish, but I also wanted to respect Mr. Wong. So I said, “Mr. Wong, I have information about what’s going on. Some people want me to tell them everything while others prefer that I only speak to their families. How do you feel?”
Mr. Wong thought for a moment and then spoke in Mandarin, which the interpreter translated. “You know doctor, everyone has to die someday.” I was stunned. I hadn’t said anything about dying. I regrouped and said that yes he was right but what I wanted to know was how he wanted me to handle new information about his condition and whether he wanted me to tell him or his family. “Oh doctor,” he replied, “you will tell me everything. And by the way, it’s OK if you also want to tell my family.”
Mr. Wong went on to tell us that he felt better and wanted to go home. He declined a biopsy that his family had been ready to consent to. Mr. Wong’s family thought they were protecting him, but they complicated the situation and made it more difficult. They nearly exposed him to a biopsy that he didn’t want.
The US and every state have laws that mandate that healthcare providers make interpreters available for any person who doesn’t speak English. These laws are so important because they support better patient-doctor and nurse communication, which is the backbone of good medical care.
Excerpted from Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers by Steven Z. Pantilat, MD. Copyright © 2017. Available from Da Capo Lifelong, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.
Our family at my brother’s high school graduation in 1998, 1 year and half before his life changed forever
This Saturday my older brother will graduate magna cum laude from Volunteer State Community College with his Associate’s degree in Computer Information Technology. While every degree is special, this one is particularly significant. Earning this degree was a hard-fought battle, requiring perseverance, inner strength, and tenacity.
18 years ago, my brother made a decision that put his entire life on hold. When our mother was diagnosed with degenerative disc disease, she underwent a spinal surgery intended to alleviate her pain. Instead, the surgery was performed incorrectly, leaving her permanently disabled and unable to work. Two weeks prior, my brother turned 19 years old, and he was entering his sophomore year at college. He had immersed himself in a full university experience: he was an honors student in mechanical engineering, he was active in rock climbing and racquetball, and he had many friends. All of that changed when our mother’s surgery went wrong. He dropped out of college to come home to provide care for our mother and me, his little sister 7 years younger. He became responsible for her physical care, cooking, cleaning, and he also got a job to pay all of our household bills. In addition, he began taking me to school. I also took part in providing care for our mother, yet my brother bore the remarkable brunt of our mother’s care needs without any outside support or assistance.
Caregiving caused an 18 year gap in time before my brother would march in cap & gown again
While my life as a caregiving youth certainly wasn’t easy, I will always recognize the role my brother played in shielding me from the more devastating effects of caregiving at an early age. Because of him, my life took a very different path. When I look at his experience as a young adult caregiver, I know what my life could have been. Yes, the stress of having a mother in chronic pain sometimes negatively impacted my time in school. But, I will never know what it’s like to have your educational dreams snatched away because of caregiving. Yes, I know what it’s like to be bullied and to not feel comfortable telling other people about your life as a caregiver. But, I will never know what it’s like to be completely socially isolated and experience the loss of every single friend you’ve ever known because your life suddenly became vastly different than your peers. Sure, I know what it’s like to push yourself through school with the goal of becoming financially successful, always mindful that one day your mother’s care will fall on your shoulders. But, I will never know what it’s like to be forced to unexpectedly work a full-time job to carry the weight of a mortgage and an entire family’s household bills at the bright young age of 19. Because of my brother, there are certain sacrifices that I have never experienced.
When I tell people our family story and they ask about our mother, I say that she no longer required intense physical care around 8 years ago, mainly because she stopped having surgeries and her care progressed to the management of her chronic pain.
“Oh!”, people often respond, somewhat dismissively, “So everything is fine.” Others even say, “Your brother isn’t a caregiver anymore.”
“Well,”, I say, always getting a bit flustered, never knowing how quite to explain our family’s situation. For people who have never experienced family caregiving, they don’t quite understand. They don’t know that in some ways, caregiving never really ends, even if direct physical care is needed irregularly. The severe financial impact never ends. The worry over our mother’s health never ends. The constant gaze towards the uptake of future caregiving responsibilities as our mother ages never ends. And for my brother, on the eve of his graduation from college, the impact of caregiving on his career never ends.
Caregiving is the reason why at age 36, despite being “on the right track” at age 19, he has finally earned his first postsecondary degree. Caregiving is the reason why at age 36, he is not yet finished in school; another 2 years of hard work is needed for him to earn a Bachelor’s degree. Caregiving is also the reason why even after those years of going back to school, he still isn’t sure how to answer the big question of “what do you want to be when you grow up?” because he lost those carefree years of exploration during young adulthood.
I always consider my experience in terms of what I didn’t have to give up because of caregiving, or conversely, what I still was able to experience despite caregiving. That’s all because of my brother. He is the reason why my life was not utterly broken as a caregiving youth, why I was able to pursue my dreams, and why I have hope for my future. He is the reason why my career has been devoted to helping other child and young adult caregivers finally gain much-needed recognition and support in the United States. I firmly believe that because of his conscious actions of selflessness and compassion, millions of other caregiving youths will one day also feel hopeful that having an ill or disabled family member no longer means that they must give up their educational and career goals. People often call my brother a “hero” for our family. Indeed he is. But, as someone who has intimately watched my brother care for us day in and day out for years, I know that he is more than our family’s hero. He has cultivated a legacy that will impact the lives of millions of other young caregivers, and his graduation, is only the beginning of his accomplishments.
Ferrell Lewis, today at his college graduation. He graduated magna cum laude in Computer Information Technology.
***This article was originally published with The Huffington Post.***
When we first become caregivers or when there’s a new emergency, we go into super hero mode. You know what I mean: you do it all, without stopping, at the same time.
Nothing can stop you, until you can’t keep it up. It’s unsustainable. You can only suck it up and forge ahead for so long before you’ll burn out.
You’re burning out
The problem is, even super heroes aren’t super heroes around the clock, day in and day out.
Taking care of someone else all the time without a break leads to anger, resentment, and sheer exhaustion. You can’t think clearly. You snap at people. You can’t connect with people. You’re so anxious you can’t sleep. You’re miserable.
You know what they need. Do you know what you need?
Take a minute to ask yourself: What are you missing? What do you have? The more specific the better.
Most of us have a few coping methods we cling to, often from childhood. They may or may not be right for the challenges caregiving presents. Caregiving is often presenting new challenges, all on top of each other. You’ll need a whole arsenal of coping methods to make it through in one piece.
Think about what you really need. What specific things are getting to you the most?
Of the things that are getting you down, which ones could possibly be changed? Even a little?
Fight decision fatigue
Caregivers get stuck with a lot of responsibility. So many of the choices we face have no good answer, leading to immense guilt and anxiety.
Decision fatigue is a real thing, and it’s exhausting. Do yourself a favor and eliminate any decisions that don’t matter. Patterns, habits, and rituals are great for this.
- Grab a few things from your closet that all match each other and fit you. Ignore the rest of your clothes and rotate these.
- Eat the same things every week. Stick with one simple grocery list. If you can, get them delivered automatically…or from a neighbor who’s going to the store anyway.
- Schedule appointments at the same times as much as possible.
- Schedule times to make phone calls, do paperwork, and other chores.
The less you have to think about chores and things that don’t really matter, the more time you can think about the things that do.
Get back control
Sure, we’re making decisions all day, but it doesn’t feel like we’re in control at all, does it?
What makes your life feel out of control? What can you do to feel like you’re back at the steering wheel?
Is someone demanding help constantly when they could really wait an hour? Set up ground rules for requests.
Is the unknowing of a lack of diagnosis driving you to your wits end? Turn to meditation or faith to learn to accept the unknown.
Has your life become a random series of chores? Set up a routine and stick with it as much as possible. Everyone works better when they’re following a routine.
Remember that caregiving is a choice. Perhaps it seems outlandish to imagine being able to walk away, but you could. What would it take? What would make you do it? Every moment you’re taking care of someone else is a moment you’re choosing to do so. You’re doing it because you want to be here, even if it’s hard.
Get in touch with you
You’re a human. Humans make mistakes, say the wrong things, and let people down. You’re going to lose your patience. That’s okay. We all do. Remember that. Other people probably have unrealistic expectations of what you should do. Let them, but remember there are limits to what you can do. You’re already going above and beyond.
Find a way to remember how proud you are of yourself. Maybe it’s journaling, a gratitude jar, or just thinking about it as you brush your teeth. A daily moment of reflection doesn’t have to be involved to be meaningful.
As a human, you still need to have an identity besides being a caregiver. Even if you barely have time for the other pieces of yourself, make that tiny bit of time. People who only take care of other people 100% of the time end up bitter, angry, and empty. This is your life, too.
You’re spending a lot of time thinking about someone else’s physical needs. Lots of caregivers neglect their own — and then die before the person they’re caring for, or become so ill they need a caregiver themselves. Stay in touch with your body, too. Go for a walk, even if it’s short. Don’t skip meals. There are lots of little tricks to stay healthy, even when things are hectic. Other caregivers are happy to share them with you.
You’ve cut out a lot of things in your life to be a caregiver. Surely there’s something caregiving related you can cut back on to make some time for yourself.
When you’re in super hero mode, everything that’s non-essential falls away. Friends and other relationships tend to get cut.
It’s fine to neglect your friends for a little bit, but in the long term it has huge consequences — for your physical and mental health.
Maybe you don’t have time to go out, but there’s always time for a quick text. Things like Facebook can help you stay involved, even if you don’t see someone regularly. It’s also a great way to let people know you could really use some company.
Adrienne found she didn’t want to talk to her old friends about caregiving. She wanted to keep her friendships as a bubble of her old, normal life. Instead, she wanted to talk to other caregivers, who better understood what she was going through. So she created this community.
It’s true — your friends might not understand what you’re going through. Those long hours in waiting rooms and hospital cafeterias are an opportunity to meet new people who get it.
But don’t let go of your old friends. Even if they’re awkward around you now, remember they have their own struggles. Invite them over for coffee, even if your house is a mess and you’re stressed out. Write them an email. Ask how they’re going and listen. You need them.
Know your strengths
None of us are good at everything.
Some of us are just not good at keeping track of bills and insurance paperwork.
Some of us have limits to our patience with other peoples emotional needs and poor behavior.
Some of us aren’t very good drivers.
You’re going to do a lot of things, but you can’t do everything. You shouldn’t do everything. Identify the things you just aren’t your strengths and find help with them.
Who will help? Social workers, librarians, and faith communities are a great start. There are community organizations that will help you with your taxes, provide free transportation, do your yard work, and provide companionship for your caree. Every community has different services, but someone you know can help you find help in your area. You can’t do this alone. And you don’t have to.
This is one of those times when Facebook can really help. Ask for something specific and you’ll have better luck.
If you’re providing 100% of the care and not sharing the burden, if something happens to you, whoever steps into your shoes will be lost. It’s not good to be irreplaceable. Other people will do things differently. They’ll be annoying to deal with. They’ll disappoint you. But it’s still worth it to get help.
People don’t feel good when they can’t contribute. Is there something your caree can do to help you? Ask them to do it. Everyone has something to give — and they feel better when they have the opportunity to share it.
Know what you need
It’s incredibly difficult to know what we need. What will make us happy? People have been studying that for millennia.
When you know what you need, you’re half way to solving the problem. Identifying a need means you can find ways to meet that need…or learn to accept that it’s going to be unmet.
Not getting what you need leads to resentment. Resentful caregivers are not good caregivers, no matter how hard they try.
The thing is, no amount of self-care will allow you to be a 24/7 caregiver for a decade without burning out. Sometimes you need a real break — a vacation from caregiving.
Lots of us are taking care of people we love. We don’t want to go on vacation without them. That’s fine. Bringing in a professional caregiver — or a cleaner, handyman, personal assistant — can free you up to have quality time with the person you love. Rather than focusing just on caring for them, you can really be with them.
Hope is an essential feature of human experience, but for patients living with a life-altering diagnosis, it can be sorely lacking. In my work as founding director of the Palliative Care Program at University of California, San Francisco, I’ve learned that in order to restore hope we have to understand how rapidly changing moods affect patients, which is why Chapter 7 of my new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is dedicated to the “Mood Roller Coaster.”
Understanding the difference between difficult moods and outright depression is part of ameliorating suffering in palliative care. So is finding milestones and events to help the patient increase their focus and determination—and possibly even extend their life. Marion’s story is an excellent example.
Marion was a 64 year-old woman with interstitial lung disease, which is a relentless scarring of the lungs. She needed high levels of oxygen just to stay alive. Marion was so sick that she couldn’t leave the ICU. When I asked her what she hoped for, she told me that she hoped to see her daughter get married. She explained that her daughter was engaged and the wedding was planned.
“Congratulations,” I said. “That’s wonderful. When will the wedding be?”
“In 10 months, in Napa,” Marion replied.
I couldn’t imagine Marion being alive in 10 months let alone well enough to leave the hospital or the ICU. So I arranged to speak with Marion and her daughter about the situation and their hopes.
Fast forward a week later to an ICU filled by a bride in a flowing white gown, a tuxedoed groom, identically dressed attendants, and a robed minister. Marion sat propped up in her bed, inhaling oxygen in her nose, and with a corsage pinned to her hospital gown. Our hospital staff, all dressed in different colored uniforms, gathered in front of Marion’s bed, where the ceremony was held. There wasn’t a dry eye in the house.
What a beautiful wedding! Marion’s wish came true. Because we asked about her hopes, we were able to help her achieve them. Was it what she imagined? Not at all. But it was joyous, memorable, and meaningful and the beautiful eclipsed the grotesque. It might not have happened had we not asked about hope.”
Excerpted from Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers by Steven Z. Pantilat, MD. Copyright © 2017. Available from Da Capo Lifelong, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.
Even as aging Americans revel in the splendor of their well-earned retirements they still harbor plenty of worries, such as outliving their savings.
Near the top of the worry list is the fear their health will deteriorate so much they’ll be forced to seek long-term care, a situation that could live them and their families slammed with expenses far beyond what they can afford.
Surprisingly enough, the solution to this particular problem may be right in their home, tucked away in a drawer.
“Many people don’t realize that a life insurance policy can be converted to pay for assisted living, home care and all other forms of long-term care,” says Chris Orestis, a senior-care advocate and author of the books “Help on the Way” and “A Survival Guide to Aging.”
“What’s really sad is that, when they’re suddenly confronted with the reality of long-term care expenses, some older people may let the policy lapse figuring they can no longer afford it. And it’s the very thing that holds the answer to their financial worries.”
Part of the problem is that, while millions of people own life insurance policies, few of them understand their rights as owner, says Orestis, CEO of Life Care Funding.
“Life insurance policies are assets,” he says. “Think of them just like a house. The owner of a house wouldn’t just move out without selling their property. Why should the owner of a policy ‘move out’ without first finding out what the real value of the policy is?”
Here are a few key facts about how that life insurance policy can be converted to a long-term care benefit plan and potentially rescue from the senior and their family from the back-breaking financial strain of long-term care:
The benefit plan is not long-term care insurance
A long-term care benefit plan allows policy holders to use any form of life insurance policy to pay for long-term care. In essence, what was a death benefit that would have been paid to the person’s survivors becomes a “living benefit” that covers the expenses of the policy holder now.
You can convert when you need it
You can’t wait until you’re about to move into a nursing home or assisted-living facility to buy long-term care insurance. At that point, it’s too late. But you can convert a life insurance policy to a long-term benefit plan at any time. There are no waiting periods, no care limitations and there are no costs or obligations to apply, Orestis says.
The full death benefit comes into play
The value of the conversion is not limited to the cash value, but is based on the death benefit. “That means the senior will receive a maximum amount of value toward their long-term care benefit plan,” Orestis says. If the insured person dies before the benefit amount is exhausted, any remaining balance is paid to the family or the named beneficiary as a final lump-sum payment.
“Families can go broke trying to provide for a loved one,” Orestis says. “In many cases, they could have avoided it but they had only known about this solution.”
Chris Orestis is CEO of Life Care Funding and a 20-year veteran of both the insurance and long-term care industries. A former Washington, D.C., lobbyist, he is a nationally known senior-care advocate and author of the Amazon best-selling books “Help on the Way” and “A Survival Guide to Aging.” Orestis also is a legislative expert, featured speaker, columnist and contributor to a number of insurance and long-term care industry publications. He is a frequent guest on national radio programs, and has been featured in the Wall Street Journal, the New York Times, USA Today, Fox Business News and PBS.
Navigating the ins and outs of the world of insurance can be a difficult task no matter how old you are. The laws are constantly in flux, and talking to an insurance agent can leave you wanting to toss your phone in the trash. When you’re caring for a family member, it can get even more complicated. To help make the navigation easier, here are a few of the most important things you need to understand about your parents’ or family member’s Medicare coverage.
Medicare Comes in Parts
You’ve probably heard commercials talking about Medicare Part D. What does that mean, and what happened to parts A, B and C?
Part A covers hospital visits and any care related to those visits. Most retirees qualify for this automatically.
You have to sign up for Part B, which covers physician’s visits. The premium for this is automatically deducted from Social Security payments.
Part D, the one you’ve probably heard the most about, covers prescription drug costs.
Part C, though it isn’t officially called Part C, is designed to cover the gaps between the other three parts of Medicare. It’s most commonly called Medicare Advantage, but you can’t always sign up for Advantage while you’re signed up for the other three parts of Medicare.
Confusing, isn’t it?
Thankfully, the federal government has set up an online plan chooser to help you pick the best plan for yourself or your loved one. If you’re still confused, you’re not alone and you’re in luck — each state has set up a state health insurance program (SHIP), which puts you in touch with a live person to help you navigate all the various parts of Medicare.
Ask for Itemized Bills
Even with all the coverage Medicare provides, you will likely find yourself looking at bills from hospitals, doctors’ offices or labs that weren’t covered by Medicare. While this is to be expected, it’s important to go over each of these bills with a fine-toothed comb.
Make sure each bill you receive, whether it is one that needs to be paid by you or one that was paid by Medicare, is actually for a service you received. Most of the time it will be correct, but transcription errors can lead to you receiving incorrect bills.
If you think something is wrong, or you’ve received a bill for a service that was never rendered, ask for an itemized bill. This will make the hospital go back over their records. If a mistake was made, chances are you’ll never hear anything about the bill again.
Keep Your Paperwork Organized
Most of the time you spend when dealing with Medicare will be keeping track of appointments and paperwork. Not only will it help you find errors that require the request of an itemized bill, it will also help if you’re dealing with multiple doctors.
It can be hard, if not impossible, to get some doctors to read a patient’s chart. You might find yourself paying for repeats of tests or procedures that may or may not be necessary. If you think a test has already been done or a procedure has already proven ineffective, speak up. Bring the paperwork to back you up.
Asking questions is your very best friend when it comes to Medicare. Whether you’re talking to a SHIP representative while you’re picking your parent’s plan, or a doctor or nurse, ask questions and take notes. A few questions you should always have in your arsenal include:
- Is this procedure covered by my parents’ insurance? If not, is there a similar alternative that is covered?
- What are the options available for psychological treatment covered by Medicare? This is an essential question if you receive an Alzheimer’s or dementia diagnosis. While there are a number of resources available, they are not all covered by Medicare.
- Have you read the patient’s chart? It’s not a rude question, even if it might sound that way. A chart is a wealth of information that is far too often overlooked.
- What is covered when it comes to preventive care? Preventive care can be a great way to, as its name suggests, prevent problems in the future. Knowing what is covered can save you a lot of money in the long run.
Keep your questions in a notebook or a memo file on your phone and if you think of new ones, add them in as well!
Even people who have spent their entire life studying the ins and outs of Medicare often find themselves puzzled when a new law or piece of legislation hits the books. If you’re taking your first steps into the world of insurance, be prepared to be confused. Just know you’re doing the best you can and there are tools and people out there to help you through the most confusing parts.
Image by Cathal Mac an Bheatha
[Editor’s note] While it seems a little inappropriate to share, this article raises some good points. Many people think of death as black and white — you’re alive or you’re not — those of us who’ve been around death know it’s not quite so simple.
Sometimes the dying process can be a difficult and lengthy one. Just how do you determine when someone is no longer alive?
Before a body slides into a morgue or is lowered into a grave, how can we know if someone is really dead? As medical science advances, the guidelines to determine death have changed, too. Miracle Max from “The Princess Bride” once assured us that “there’s a big difference between mostly dead and all dead.” It was… (more…)
One of the hardest challenges I experienced in caring for my father was helping take care of him when he was hospitalized. His memory got worse and his confusion was heightened being in a new setting. He suddenly became aggressive and agitated and had to be temporarily restrained which increased his agitation even more. I felt helpless and heartbroken.
It is not unusual for seniors to find themselves facing some type of medical problem due to a medical condition or accident that requires hospitalization. When you add that condition to someone who already has memory loss or confusion the need for specialty care becomes elevated. The first thing to do is understand why a hospitalization can trigger these types of reactions:
- They may be in pain or uncomfortable because of the medical problem and not understanding why they are in the hospital. They may have to undergo medical treatment like x-rays, injections, IV’s, catheters, that can be very frightening and painful.
- Their regular routine has changed and they may be unable to sleep in a hospital setting causing more confusion and fear.
- They are in a new place with hospital staff that are strangers coming in their room all hours day and night which can be very frightening and confusing.
- Delirium, or sudden mental confusion, can occur with a hospitalization. It can be triggered by an infection or extreme stress. Even people with no memory issues can suddenly have an altered memory status.
Now you have an understanding of what the potential reasons for enhanced memory or
behavior problems are. It is important to note there are concrete steps you can take to help
manage these problems or at least try to reduce the severity and longevity:
Work With Hospital Staff at time of Admission
The hospital staff needs to understand what your loved one’s baseline memory and functionality is so they can act quickly if changes are noted.
Have a Familiar Family Member Spend as much time as possible with the patient
Having someone your loved one knows be close by to help advise staff and calm the patient is very important. Just seeing a familiar face can reduce agitation and anxiety.
Discuss Hospital Policy on Management of Patient with Aggressive Behaviors
Talk to a doctor and hospital staff about what they recommend when these instances occur and patient and staff safety become problematical. They may suggest restraints or medication that can calm the patient. Make sure you are OK with the plan. Do you want to be contacted if this occurs? Are you against the use of restraints? Ask about other options like a sitter or an alarm.
Consistency of Staff and Routine
Request that your loved one has the same nurse, nurses aide, or other staff when they are working. Having people a patient is familiar with can reduce the incidence of behavior problems or enhanced memory issues. Also having the same routine every day can be helpful. For example meals and physical/occupational/ speech therapy sessions at the same time can help orient a patient.
Placement of Patient
If your loved one is disruptive have him/her in a room closer to the nursing station and without a roommate. This helps ensure staff will be more attentive as issues arise. Not having a roommate disrupts the frequency of unfamiliar people coming in and out possibly causing regressive tendencies.
Visual and Verbal Reminders
Try to have a clock and calendar visible to help orient your loved one. Have photos of family members with names on them. When visiting, speak softly in short sentences identifying who you are. Be in front of the your loved one by their face so you can be seen and they are aware you are there. Hospital staff should be advised to also use these techniques. Remind patient’s why they are in the hospital. Refer to your loved one by name or relationship, i.e.. “Dad this is Iris, your daughter.”
Use Calming Techniques
Using a smile or gentle touch can go a long way to calming an agitated person.
Don’t dispute or argue about what they are saying. Instead try to understand why they are saying it. My father told me he saw a cow outside his hospital room. Rather than discounting it I looked out his window. I noticed a piece of construction equipment that was oddly shaped and looked like it might have horns. I asked him if that was the cow? It was. Use reassuring words. If they seem worried about something ask why.
Don’t try to rush them into doing something. Allow time for them to prepare and explain what is going to happen in understandable steps. Offer reassurance that you will be there as things that might cause anxiety will be happening.
Bring Familiar Items from Home
If your loved one has a special pillow, blanket, clock or photograph, bring it to the hospital. If they like specific music, use that as something to do together during your visit. If they wear glasses, dentures, hearing aids make sure they are there because that can help with communication and orientation. Things can easily get misplaced or disappear from a hospital room so keep track of where they are placed as much as possible.
Good communication is a key component in making the hospital stay go as well as possible. Make sure that information about your loved one’s deficits is placed in their chart, their care plan, and if there is a board in the hospital room for special care instructions place it there. Also you can write this information on a piece of paper and hang it on the wall near their bed. If you see new staff working with your loved one, make sure they are aware of any special concerns or care needs. These steps can bring peace of mind and lessen anxiety for all concerned parties.
Family caregivers have to go through a lot – giving care to a loved one can be frustrating, difficult, and heartbreaking. And that’s just normal, day-to-day life – things can become harder when a catastrophe happens, like a sudden fall or other critical, life-threatening injury.
Because of this, even family caregivers who live with their loved ones should be taking steps to help the one they’re caring for stay safe and avoid injury – especially in the bathroom.
The bathroom is the #1 place where elderly people fall – clocking in at 35.6% of all nonfatal falls in the elderly. Because of this, it should be one of your first priorities when it comes to the safety and security of the loved one you’re caring for.
We’ve put together a list of 5 of the easiest ways you can help secure the bathroom for your loved one, and help mitigate the risk of a disastrous fall. Check them out below.
1. Install Grab Bars
Grab bars are one of the simplest and least invasive precautionary measures you can install in your bathroom – and they’re quite inexpensive. These bars allow your loved one to have a solid surface to hold and grab, whether they’re just looking to keep their balance, or attempting to prevent a nasty fall.
Typically made of stainless steel or another high quality, sturdy material with a grippable synthetic or rubberized surface, grab bars are absolutely essential – and not just in the shower.
A greater majority of falls in the bathroom occur on the toilet – not the shower. Because of this, grab bars should be installed both in the shower, and near the toilet, where they can offer aid to your loved one when they’re attempting to sit down on the toilet, or stabilize themselves when getting up.
2. Prevent Slips – And Remove Trippable Rugs
Slipping is another huge cause of falls in the bathroom – a tiled surface with water or a shower without some kind of rubberized mat can be a huge risk to an elderly person who lacks balance or strength. Any surface that’s a risk should have a rubberized mat installed, with proper steps taken to ensure that the mat will not slip itself, and can drain water and other fluids away easily while maintaining a grippable surface.
Making sure that all rugs, mats, and non-slip surfaces are secured is incredibly important, as unsecured rugs and mats are another huge cause of falls. Think about it – your loved one will never assume that these items are out of place, so even the slightest movement or upturned corner could be enough to trip them up.
Remove dangerous rugs and mats, then replace them with secured rubberized mats that are non-slip, and won’t move around or turn up at the corners.
3. Pay Attention To The Toilet
As mentioned above, toilets pose an even greater risk than showers when it comes to accidental falls – this is due to the fact that they are used more often, and usually not perceived as risky – whereas most elderly people know that showers are slippery and could pose problems, and thus are alert, the toilet is viewed as an everyday necessity that’s not as dangerous, which can put them off their guard and cause accidents.
Besides grab bars, consider other safety equipment for toilets – items like raised toilet seats can be very helpful, as they integrate side-grip bars with a high-profile design that minimizes the time that the elderly spend trying to balance and sit on the seat.
Toilet safety rails can also be considered if the design of a bathroom precludes grab bars – these devices consist of two large, sturdy safety rails anchored to the side of the toilet, and allow for increased stability when attempting to stand up from a seated position.
4. Take A Second Look At The Shower
Once you’ve put in grab bars and non-slip mats, you may think the shower is totally safe, but you’re not quite there yet.
Exertion can be a problem when it comes to showering – the elderly are more likely to tire out physically, which can be an issue when combined with hot temperatures that their bodies are less suited to mitigate. Because of this, it’s recommended that further safety precautions be taken, beyond mats and bars.
Reorganizing the shower can be important – everything that your loved one needs during a shower should be accessible without moving or reaching – this can lead to catastrophe, even with grab bars and mats.
A shower stool may also be a good investment – combined with grab bars, it is rather simple to sit down and get up on these non-slip stools as necessary, adding safety and autonomy to the shower experience.
Another problem can be getting in and out of the shower – the steps necessary and the awkward balance required to swing a leg out of a bathtub or high shower can be extremely dangerous. To help mitigate this risk, shower steps can be used – these non-slip devices allow a higher step profile, and allow the user to descend more gradually.
If even that is too much of a risk, you may consider a walk-in tub or shower – while expensive, these specialized designs are very friendly to the elderly, allowing easy entrance and exits.
5. Improve Visibility
This is often overlooked – but the elderly tend to use the bathroom more, and tend to wake up multiple times at night to urinate.
This can be extremely dangerous, depending on the lighting conditions in your specific home, but these risks can be mitigated somewhat by night lighting running from the bedroom to the bathroom, or even motion-sensitive lighting in the bathroom.
Even the most alert elderly person may trip or fall if they can’t see what they’re walking on, so it’s essential that this risk is mitigated, especially in the already-dangerous bathroom.
Mitigate Risks, Maximize Safety and Autonomy
It may be embarrassing to discuss the details of bathroom safety needs with your loved ones, or the ones who you’re giving care to, but it’s absolutely essential. Even just one fall can lead to poor health outcomes and long recovery times, so catching these problem areas before an accident is absolutely essential.
Don’t delay. Take a deep look at the bathroom, figure out what steps need to be taken, and ensure the safety of your loved one, and help them regain more control and autonomy.
As Our Loved Ones Age
All things considered, aging is a natural process that affects our daily living and self-care. We recognize that with old age, many problems and disease condition set in, making it difficult for loved ones to carry out their basic activities of daily living, also referred to as ADL.
Some of ADL that become challenging with aging and illness are:
- Personal grooming
- Moving in and out of bed or chair
- Climbing stairs
- Maintaining a safe environment
Instrumental Activities of Daily Living
Health experts have categorized another group called IADL—these complex activities require some expertise and decision-making skills:
- Using public transportation
- Handling medical emergencies
- Taking and preparing medications
- Finance management
- Social activities
Knowing When We Need Help
Regrettably, as our loved ones are affected by various illnesses, they often find it difficult to carry out their daily routine tasks.
Seeking some form of help from family caregivers or a professional in-home service, can provide much needed relief and support. Let your loved ones manage their lives as long as they can.
The idea is for your loved one to live an active, productive, healthy lifestyle as long as possible. There are tools and exercises to maintain and increase their independence and support both ADL and IADL:
- Occupational therapy
- Strength training
- Balance exercises
- Brain games
- Ergonomic equipment and devices
In occupational therapy, our loved ones learn to exercise on a regular basis in order to maintain their functional independence. This refers to one’s capacity and capability to carry out their daily activities with minimum help from caregivers.
Furthermore, the lifelong benefits of exercise, strength training and balance exercises on a regular basis can ensure our loved ones enjoy lifelong benefits, and continue to independently handle their daily activities with ease.
4 Basic Necessities
Our loved ones should develop the habit of exercising regularly and continue with the practice. As well as helping them carry out their ADL, it will enable them to stay active. Exercise and occupational therapy are more of a necessity if our loved ones are frail. OT can significantly reduce their dependence on help from others.
Prospective memory is a form of memory that involved remembering to perform a planned action or recall a planned intention at a future point in time and successfully carry our these instrumental activities. I’ve found, in my practice, that brain games significantly improve prospective memory and IADL.
Some Brain Games to Try
- Memory Card Games
- Computer Applications
- Board Games
In general, the more enjoyable the activity, the easier it will be to get your loved one to try it. Sensorial stimulation can increase their ability to remain mentally independent. Each activity should be tailored to their abilities and interests. Keep their hands exercised, strong and limber. It will make it easier for them to do so many of the activities listed above.
Equipment and Devices
- Canes and Walkers
- Grab Bars
- Raised Toilet Seats
- Special Eating Utensils
- Ergonomic Writing Pens
- Magnifying Glass
- Hearing Aids
In conclusion, figuring out your loved ones difficulties before there is a problem can make independence a lot easier for them and for their loved ones.
- Practice ambulation. Use a cane of walker to maintain their balance when needed.
- Install grab bars throughout the house—in hallways, the kitchen and bath for stability.
- Purchase special eating utensils for proper control
- For loved ones with arthritis, there’s a special pen that will ease difficulty writing.
- Purchase a magnifying glass to help them see more clearly.
- See a doctor to be fitted for a hearing aid.
Are you thinking it’s time to schedule a family meeting to talk about your aging parents?
Don’t do it.
I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.
Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.
Start the conversation
You don’t need a special occasion to talk about aging.
The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.
First, write down all the questions you have for your parents. Maybe you want to ask them:
- What will you do if you need help every day?
- How much can your family help you?
- What would you do if you couldn’t stay in your own home?
- How can you adapt your home to make it safer?
- How can we pay for medical care?
- How can we pay for home health care?
- How can we pay for nursing care?
- What’s most important to you if you become very ill?
- Who do you want to make decisions for you if necessary?
Then, answer all of these questions for yourself. What would you want if you were ill or injured?
Look over your insurance policies, your medical coverage, your savings, and your bills. Fill out a living will. Think about what your family would do without you.
Then think about how you should approach these topics with your parents.
Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.
Know what matters
The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.
The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.
These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.
These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.
Plan from the beginning
We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.
When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.
Don’t make it awkward
Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.
There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.
Then you’re talking about this amazing book you just read, not planning their demise.
If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.
According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.
In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.
Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”
With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.
In this article, we want to briefly overview three essential ways to do just that.
1. Engage Family & Social Networks
As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.
To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.
2. Mind Your Own Health
As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.
A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.
Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.
3. Take Advantage of Specialized Support
There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.
You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.
Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.
Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.
By Adinah East, VP Quality Improvement, Caring People Inc
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.
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
- Education discounts
- 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.
This article first appeared on CouponChief.com: https://www.couponchief.com/guides/savings_guide_for_those_with_disability
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.
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.
This great website helps seniors learn the computer skills that feel like second nature to us — like using a mouse — that can be difficult to get a hang of.
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.
Senior Planet’s tech tips section is an always-up-to-date source for information on the latest tech trends, apps, and tools.
A friendlier experience
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.
Clear out the clutter of typical search engines and direct your senior to Good50 instead. They’ll get the same results with an easier navigation experience.
Clear away the clutter of a typical PC interface and replace it with something designed to be intuitive for seniors.
So many caregivers find their requests for help fall on deaf ears. So many people say they’re willing to help, but then they never seem to be around when you need them. Why does this happen?
Friends and family
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.
A social worker can:
- provide counseling for you and your family
- connect you to support groups and other families
- help you find financial support
- help you communicate with the medical team
Many people struggle when a family member is seriously ill or disabled. Social workers can help you cope with the financial, emotional, and practical problems you’re facing.
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.
Follow Igor Lebovic on Twitter.
Featured image: Roman Nerud / Shutterstock.com
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!
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.
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!
The capital gains tax exclusion
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.
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.
“Unfortunately, it’s not always easy to have those conversations,” says Rosenblatt, co-author with her husband, Dr. Mikol Davis, of The Family Guide to Aging Parents and Succeed With Senior Clients: A Financial Advisors Guide To Best Practices.
“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.
As the oldest child, my mother has been called upon to serve as the executrix for multiple family members. I recently asked her what was involved with executing a will and she was kind enough to write this up for us:
Being named executor of someone’s estate is a daunting task, involving patience, fortitude and responsibility. Talk with the individual about his/her wishes and financial holdings when you are both calm and clear-headed, well BEFORE the final act.The conversation should include funeral arrangements; location of the legal will; where financial docs, passbooks, stock certificates, deeds, etc. are kept; how the contents of the home should be distributed; if the individual has a prepared obituary available.
The legal will should NOT be kept in a safe deposit box.
When the meeting with the funeral home takes place, try to have someone accompany you. Mourners are sometimes moved by guilt and grief in spending more than might be prudent.
Order more death certificates than you think you will need. For each account (bank, life insurance, investments, even EZPass) one must submit a death certificate with a raised seal.
Probate the will. This means bringing the original will and death certificate to the county seat in NJ where the deceased resided. Sometimes satellite offices are set up at local libraries. As a result of this meeting, a surrogate’s letter (sometimes called letter of testamentary) will be generated. When the executor of the will liquidates the deceased’s assets, a death certificate and surrogate’s letter minimally must be produced.
Regarding the deceased’s checking account, it would be optimal if the deceased and executor have a joint account. Bills must be paid for the deceased while the estate is being executed, which sometimes takes months. If a joint account has not been established, be aware of how long the checking account will be kept viable by the bank before it is closed.
Notify by mail the heirs named in the will.Notify all agencies of the deceased’s holdings (banks, investment companies, life insurance, pension offices, etc) of the owner’s death. The funeral home will notify the Social Security office automatically.
Keep careful records of all financial transactions while liquidating the deceased’s holdings. Include detailed expenditures and deposits in the checkbook.
Should the contents of a home need to be removed, enlist help. Hopefully the deceased will have already distributed special possessions to the special people in his life or included directives in the will. Additionally it is recommended before death to clean and organize the home as much as possible. If multiple visits to charitable drop-off locations (Goodwill, ASPCA for pet bedding, local thrift stores, Elks for medical supplies) is not possible, there are agencies who will empty out a home. Freecycle is another option.
Depending on the estimated value of the estate, enlisting an account or an attorney could be prudent. Although there are numerous resources on-line, in local county offices and in publications, it is often easier to phone a professional for advice.
It is possible that financial holdings should not be liquidated without tax waivers. This is pertinent if the estate’s value is very substantial (check the actual number according to the residence of the deceased). Taxes for the estate must be paid, including federal and state income tax and estate tax. Hopefully the deceased has considered financial planning BEFORE his passing which could include trust funds, gifting and other options.
Caring for a loved one living with diabetes is quite a responsibility and when it comes to the approximately 29.1 million people living with diabetes in the U.S., it’s important to know the types of complications your loved one may face as a result of the disease.
What many people may not know is that diabetes can result in diabetic foot ulcers. Healogics, Inc. encourages those living with diabetes and their caregivers to know how to take good care of their feet.
Healogics is a wound care services management company, putting patient care at the forefront of everything we do. With nearly 800 Wound Care Centers® across the nation that are part of the connected network of outpatient centers, academic medical centers and other post-acute sites, we offer an evidence-based systematic approach to advanced wound care treating an underserved and growing patient population.
Twenty-five percent of people living with diabetes will eventually develop a foot ulcer due to diabetic complications and foot ulcers precede 85 percent of lower extremity amputations in patients with diabetes. This disease can also cause heart disease, stroke, lack of circulation and feeling in the lower limbs and other complications which can result in hard-to-heal wounds.
The fear of losing a limb is very real for people living with diabetic foot ulcers. Healogics offers hope to these individuals with longstanding (chronic) wounds through data, advanced wound care therapies like hyperbaric oxygen treatment, and access to wound care specialists who are passionate about finding a solution that will work for each individual patient.
Healogics mission is to share our wound care expertise with every patient who could benefit, wherever they are, and by the best means available. With nearly half of our patients living with diabetes, it’s important to talk about how the disease affects wound healing and the preventive steps patients and their caregivers can take to avoid complications. Healogics offers the following tips for proper foot care:
- Get comprehensive foot exams each time you visit your healthcare provider (at least four times a year)
- Perform daily self-inspections of the feet or have a family member assist
- Clean toenails and take care of corns and calluses on a regular basis
- Choose supportive, proper footwear (shoes and socks)
- Improve circulation by eating healthy and exercising on a regular basis
- Stop smoking immediately
It’s important to seek help from wound care experts. Healogics has a network of more than 4,000 providers across the country who receive ongoing advanced wound care training, and in 2015 alone saw approximately 285,000 new patients.
The team at Healogics has a true passion and enthusiasm for wound care that can be felt from the first moment you walk into one of nearly 800 Wound Care Centers. Our teams work day in and day out to ensure patients return to a great quality of life, and have the opportunity to enjoy the people and hobbies they love most.
Dr. Scott Covington, MD, FACS, CHWS, Chief Medical Officer for Healogics
Dr. Scott Covington is the Chief Medical Officer for Healogics. Certified by the American Board of Surgery and a fellow in the American College of Surgeons, Dr. Covington was founder of the first multidisciplinary wound center in North Carolina’s Wake County. In addition to an extensive clinical experience in wound care, Dr. Covington is a Certified Hyperbaric and Wound Specialist (CHWS) with the American College of Hyperbaric Medicine, representing a dedication to the highest standards and achievement in wound care with an advanced level of specialization in hyperbaric chamber operations.
Dr. Covington lectures frequently throughout the United States on wound care, and serves as an industry advisor on wound-related issues. He is a member of the Wound Healing Society, the American College of Hyperbaric Medicine and the Undersea & Hyperbaric Medical Society.
Dr. Covington completed his undergraduate and medical school education at the University of North Carolina, Chapel Hill, and was trained in General Surgery at University of Texas, Houston.
Headquartered in Jacksonville, Fla., Healogics is the nation’s largest provider of advanced wound care services. Healogics and its affiliated companies manage nearly 800 Wound Care Centers® in the nation and saw approximately 285,000 new patients in 2015 through a connected network of partner hospitals and Wound Care Centers, academic medical centers, and other post‐acute sites. Healogics utilizes an evidence‐based systematic approach to chronic wound healing to treat an underserved and growing patient population. A fund managed by Clayton, Dubilier & Rice, a private investment firm, is the majority shareholder of Healogics. For more information, please visit www.healogics.com.
I remember when I was first tasked with figuring how the finances would work for our family to assist with caregiving. Social Security, Medicare, Long Term Care; the reality was daunting. I didn’t even have enough work history or income to qualify for these benefits and I needed figure out how they work for my family.
If you are a working professional who is tasked with the responsibility of assisting an elderly parent who has been diagnosed with a chronic illness, you maybe having similar thoughts as I was in regards to their finances. If this is the case, having a plan is going to be your saving grace to make sure they receive the best care possible, without interruption due to finances.
First, you need access to your loved one’s information. Power of Attorney is critical in managing day-to-day finances for someone who a chronic illness, however, having the document is not the only step. Make sure banks, financial advisors, CPA’s and anybody dealing with privileged information receives a copy of it and approves you to act on your parent’s behalf.
Now that you have access to their information, you may have to make decisions about what assets to use to pay for their care. Below is a summary of some common assets you may use or need to know about:
- Social Security: Senior citizens are eligible for payments from the Social Security starting at full retirement age (typically age 67). The payments are based on their lifetime earnings and are paid out monthly. If someone is disabled prior to full retirement age, they may be eligible for Social Security payments as well.
- Medicare: Basically, there are three parts: Part A: hospital insurance, Part B: doctor visits and Part D: prescriptions. Medicare is available to individuals once they reach the age of 65. One thing to keep in mind with Medicare is that there is no long-term care insurance. They are eligible for Skilled Nursing Facility Care only after a hospital stay and only up to 100 days.
- Medicaid: This is a program designed for needy and vulnerable individuals and families. It is a federal program, however, each state is in charge of administering the Medicaid dollars and determining need. What is nice about Medicaid is that it does offer Skilled Nursing Facility Care. However, since this is designed for low income population, it is very hard to qualify. Families sometimes try to “spend down” a loved one’s assets to qualify them for Medicaid, however, states now have a five year look back period to see if large amount of assets were given away instead of being used for care. Consulting an attorney is the best way to implement a strategy to qualify a parent.
- Retirement Plans: Your parent may have saved money in a retirement plan during their working years or may have a pension from an old employer. It is important to use this as additional income if Social Security is not going to be enough. Some accounts you may typically see are 401(k)s, 403(b)s, Pensions, IRAs and Roth IRAs. All distributions from these accounts are considered to be taxable income (except the Roth IRA), so tax planning may be involved.
- Reverse Mortgage: Typically thought as a last resort, using a reverse mortgage on your parent’s home may be a great way to get some supplement income to cover the cost for care. If your family has decided not to keep the home after death and if there is little to no mortgage, this is a great way to create income off an asset that is illiquid. Reverse mortgages are only available to those 62 years and older and may only take up to a certain amount on the value of the home. If you are considering this option, discuss it with a financial planner as well as a reverse mortgage broker.
In my experience, the more prepared you are, the less likely for caregiving to become a nightmare. Make sure you create a plan and periodically check in to make sure you are on track. Don’t be afraid to ask for professional help as well. There are many professionals with expertise in these areas that can help ease the stress of trying to figure it out on your own.
According to the U.S. Department of Veterans Affairs (VA), family members and friends who care for veterans spend, on average, more than 20 hours a week taking care of their loved one.
This may take a heavy toll on caregivers, but there is help and assistance for those in need of support.
Called VA Caregiver Support, this federal program ensures that veterans stay home longer by supporting their caregivers.
“Caregivers are the most important part of veterans care,” Caregiver Support Coordinator Ryan Mooney of the Stratton VA Medical Center in Albany, NY said.
Mooney said the cost of long-term care for veterans is immeasurable, running into the hundreds of thousands each year, but caregiving cuts down the expense of that care.
“Without caregivers, the veteran will be in hospitals and long-term care facilities. Living at home is better both for mental and physical wellbeing,” he said.
Support comes in many ways including providing home health aides, therapeutic workshops, and individual and group counseling at the VA medical center and at home.
Veterans who served in the military post-9/11/01 are also qualified for a stipend.
In order to qualify for the VA Caregiver Support program, the veteran must require assistance in two activities of daily living, like washing or cooking for themselves.
The VA’s Adult Day Health Care (ADHC) program at the hospital is another intervention available to the caregiver and the veteran providing respite to caregivers three days a week.
The caregiver can then arrange to take care of personal matters during this time.
“They (caregivers) know they can go to their appointments while their loved ones are at ADHC,” Mooney said. “We can also give up to 30 days of respite care who need institutional care.”
Caregivers are also able to call the Caregiver Support line at 1-855-260-3274.
“Veterans by their nature are independent, but when it comes to healthcare this can be a detriment,” Mooney said.
“We rely on their caregivers to provide us with accurate information to help assess their individual medical needs,” he said.
Support for caregivers is needed more and more as the population ages, Mooney said.
“Caregivers can show signs of dementia if they are taking care of veterans with dementia like Alzheimer’s disease. They are doing multiple things as well as taking care of their loved one,” he said.
“It’s important to stay home for the holidays or sharing the games on TV with each other. One veteran is especially grateful that he can spend time at home watching his favorite team, the New York Yankees, on TV with his wife,” Mooney said. “It definitely has had a positive impact on his welfare.”
When people age, they need more people to care for them, according to Mooney, and as medical interventions increase the longevity of people, caregiving will become more important.
Mooney can be reached by phone at 518-626-6020.
Visit www.caregiver.va.gov for more information on VA Caregiver Support.
Computers are everywhere. Naturally, they’re used widely by doctors and hospitals. Without doubt, these technologies are improving care and communication among doctors and patients. But there are new challenges too. Do digital tools interfere with a doctor’s ability to treat patients effectively? There are pros and cons, but one thing is certain: they are here to stay.
What can you do to optimize your relationship with your doctor and his/her computer? Before I present my four tips for being a patient in the digital world, it is important to understand some of the pros and cons of computers in medicine.
Electronic Health Records (EHR) systems can improve data accuracy and sharing, but currently, most EHRs don’t communicate with each other, making it difficult for doctors to easily access comprehensive patient information.
How doctors use EHRs can significantly impact appointment quality. Doctors must listen to patients, respond appropriately, and engage with patients. A doctor typing or dictating may not be able to listen intently to the patient and may have diminished face-to-face connections.
Additionally, doctors can make mistakes when entering information, including mistakes regarding diagnosis, tests, and medications. This misinformation will travel with you if corrections aren’t made.
So What Can You Do?
- Make Sure Your Doctor Is Paying Attention to You
It is crucial that your doctor listens to your complete story, as this is a major part of getting a correct diagnosis and treatment plan. If your doctor is distracted by the computer, speak up. If needed pause while your doctor types. Realize that doctors are people too and it’s a challenge for anyone to do two important things simultaneously.
- Take Charge of Your Medical Information
Make sure your EHR is accurate by asking your doctor to print a copy of each appointment’s notes. Notify your doctor if you see inaccuracies.
Don’t rely on your EHR – keep your important medical records together and organized, including test results, medications prescribed and clinical trial information, and bring them with you to all medical appointments, including visits to the ER.
Don’t assume your doctors are communicating with each other, or reading each other’s reports. Doctors are not communicating with each other as much as 70% of the time.
- Take Detailed Notes at all Appointments
Your doctor’s notes may be inaccurate or incomplete, and are often not shared between doctors. It is critical that you take detailed notes, while still with the doctor, at every medical appointment – don’t even wait until you get in the car! A landmark study found that 40-80% of medical information provided by healthcare professionals is forgotten immediately; the more information presented, the lower the proportion remembered. Of the information that was remembered, almost 50% was remembered incorrectly.
Take notes by hand, not on your phone, tablet or laptop. Importantly, writing (versus typing) helps you remember and understand information. A recent study on note taking by college students found those who took handwritten notes remembered the material better, and were able to synthesize the information better, than students who used a laptop. It’s hard to say if this translates into note-taking in a doctor’s office, but these findings could apply.
Writing helps you maintain eye contact with the doctor which can improve the quality of the appointment. Lastly, if you use a tablet or phone, auto-correct may dramatically change important words, leaving you guessing. If you want to keep digital notes, type your handwritten notes at home.
- Be Vigilant About Medications
To minimize your risk of dangerous medication errors caused by ordering systems:
- Don’t assume ordering systems will eliminate the risk of being given medications that dangerously interact. If you are taking multiple medications, discuss the potential for adverse drug interactions with your doctor and/or pharmacist. Fill all your prescriptions at one pharmacy; their computer may detect potential adverse drug interactions.
- When given a new prescription, write down the name, dosage and instructions. Before you pay, double check to make sure you are given the right medication.
- If a medication doesn’t look familiar, ask your pharmacist (outpatients) or your nurse (inpatients) before taking it!
Technology in healthcare is here to stay. Ideally, we’ll each have a master digital file that fully captures our health history which can be accessed, shared and updated by all of our doctors, offering a more comprehensive view of our overall health and improved care coordination between specialists. However, even when EHRs reach their full potential, it will remain critical for patients to be fully involved in their care by actively advocating for themselves. It will always be important for patients and providers to ensure that EHRs and other technologies don’t get in the way of basic care and critical patient-physician communication. By being engaged in the process and speaking up if something doesn’t feel right, you can help ensure that your doctor’s computer is a help, not a hindrance.
Caregiving is a difficult role. It’s filled with unexpected challenges, as well as physical and emotional turmoil that can lead to poor health. When you’re the primary caregiver to an aging loved one, their wellbeing is at the top of your priority list. However, taking some time for respite care can help you stay healthy too, so you can continue to provide quality care for a loved one at home.
Here are a few respite care services that can support you in your role:
In-Home Respite Care
In-home respite care is one options that families utilize to support aging loved ones who have decided to age in place. There are many in-home care agencies that offer trained caregivers to families for a few hours or a few days a week, depending on the elder’s needs. Most agencies have a base rate between $25 and $45 per hour.
These caregivers can provide companionship, physical therapy supervision, meal preparation, transportation, and help with activities of daily living such as bathing and dressing. Everyone needs a break from time to time, and hiring in-home care is a great way to get the support your loved one needs so you can take some time to focus on other responsibilities.
Community-Based Respite Care
Many senior housing communities also offer short-term respite stays ranging from a few days to a few weeks long. These short-term stays are great for families who need a break from their caregiving duties, are going away on vacation, or are otherwise unable to provide the needed care. Respite stays generally range from $150 to $300 per day.
During these short-term stays, communities provide assistance with activities of daily living, support with medication management, and provide nutritious meals to residents at no extra cost. To aging loved ones, a respite stay will feel like a luxury vacation in a welcoming community of peers. To family caregivers, a respite stay can provide peace of mind so that they can take time off to focus on their own health and wellbeing.
A variety of organizations also provide respite grants for families of aging loved ones to utilize when they need some help in their caregiving role. The Alzheimer’s Association, the National Family Caregiver Support Program, and the Alzheimer’s Foundation of America all offer funding to families in need of in-home or community-based respite care. Grants often range from $500-$1000, and can usually cover up to a week of respite care. Many senior housing communities will work with families and organizations in order to schedule respite stays that fit within the grant budget.
Online Support Groups
If you decide that you’d like to keep caring for an aging loved one, but just need some support from others going through the same experience, online support groups can be extremely beneficial. Whether you join a Facebook group for caregivers or a forum on The Caregiver Space, being part of a community can help you feel supported in both good times and bad.
These are just a few examples of respite services that can serve your family as you work tirelessly to provide care for aging loved ones at home. Even a few days of respite can make a world of difference when it comes to taking on a caregiving role. So if you start noticing the signs of caregiver burnout such as fatigue, stress or anxiety, consider respite care to help you get back on track.
Jacqueline Hatch is the Content Manager at Seniorly, a company that provides free resources for families in need of senior care services. Her goal is to produce educational articles for Seniorly’s Resource Center to help families navigate the complicated world of aging options.