How I keep going

How I keep going

Resilience. Tenacity. Strength. Toughness.

Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.

Inner strength is a decision.

There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.

Put one foot in front of the other.

We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.

Know why you’re here.

Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.

It will always be hard.

Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.

Create a bubble.

I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.

Respect yourself.

No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.

You need highs and lows.

Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.

giving up isn't an option

18 years ago, Caregiving Forced My Brother to Drop Out of College. Today, He Finally Graduates.

18 years ago, Caregiving Forced My Brother to Drop Out of College. Today, He Finally Graduates.

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.***

Elder Financial Abuse Hurts Caregivers, Too

Elder Financial Abuse Hurts Caregivers, Too

The emotional and monetary consequences of elder financial abuse take a toll on caregivers as well as seniors directly victimized, Allianz Life said Monday in releasing findings of a new study. A vast majority of both active and prospective caregivers reported that they had incurred costs when their elder was financially abused, an average of $36,000,… (more…)

How do we cope with anger as a caregiver?

How do we cope with anger as a caregiver?

We all recognize that caregiving is a complex task. It can bring a new closeness with the person you are caring for. It can inevitably bring a flood of emotions including compassion, nostalgia, gratitude, devotion, frustration, grief, sadness, love, guilt, and anger.

Anger is an emotion that is particularly challenging for caregivers. It is normal that at some point in the caregiver relationship it will appear. Often times when your role is not acknowledged or the person you are caring for is agitated or aggressive the stress of this role feels overwhelming. You are also simultaneously coping with the grief of losing the person you knew which is an additional component. The reality is unexpected behaviors or medical problems can happen. In your role as a caregiver you cannot always stop or control these situations making you feel helpless and isolated.

The first thing to recognize is anger is a normal reaction. Caregiver fatigue evolves from daily physical and emotional exhaustion. You may become emotionally raw. Do not chastise yourself of feel guilty when you have moments of high frustration or anger. You are human and nobody can always balance all aspects of their life, family other relationships, work, other life commitments in a seamless way. There are things you can do and need to know as you find yourself experiencing these feelings:

 

Recognize that you are making a difference even when it doesn’t feel that way

Think about what care options would be available if you were not there and how significant your role is.

Be kind to Yourself 

Forgive yourself for moments when you become frustrated and angry. Focus more on the countless times when you were patient and compassionate. Allow yourself to have moments of imperfection.

Allow Yourself Respite

Be aware of your own body and feelings. Don’t wait till you crash physically or emotionally from your caregiver responsibilities. Be proactive on your own behalf and get additional support from a relative, friend, of healthcare professional, or respite care program. Give yourself time to recharge. It will benefit you and the person you are taking care of.

Take a Moment to Consider Why You are Angry

When someone is yelling at you or being physically aggressive it is hard not to get angry. Carefully consider why the person you are caring for is doing things to make you angry. Maybe their behavior has nothing to do with you. Perhaps their medical condition creates poor impulse control or memory and they can’t help but ask you the same thing over and over again. Maybe they don’t recognize you and are afraid you are a stranger and they are reacting out of fear or confusion. Maybe they are having a reaction to a medication. Sometimes understanding the reasons for their behavior can soften your reaction. Your feelings about caregiving  will change moment to moment.

Incorporate Some Fun Into Your Role as a Caregiver

Think about something you would like to do that could bring some relief from conflicts. For example turn on some music and dance. Music can have a soothing affect on all concerned. Pick a favorite movie and watch it together. Take out old photos and reminisce. That can be meaningful for both of you.

Redirect

If trying to get dressed becomes a battle just stop. Focus on something else and come back to it later. Give the person you are caring for limited choices when appropriate. For example, would you like to wear your blue or red shirt. Have them both out so the person you are caring for can choose. This way you both feel like you have some control which helps reduce frustration and anger.

Identify Healthy Ways to Release Your Anger

Maybe you will feel better after you kick a ball or punch a pillow. Maybe going in another room and saying what you would like to say letting it out will help. This release will help calm you down so you can move forward with it taking less of a toll.  Physical exercise releases tension and can lift mood. Can you take a walk, do jumping jacks, yoga, or meditation? Think about what feels right for you. Writing can be a great release. Write your feelings down or what you would like to say. Transfer your feelings into a poem. You don’t have to share it with anyone. It is another form of healthy release.

Don’t spend time Getting Upset about Things You Cannot Control

This takes extra time and energy you don’t have. Remember you cannot necessarily control the actionsof the person you are caring for. You may have a big fight yesterday. The person you care for has no memory of it today. Try to leave your anger behind. Focus on what you can control which is your reaction and attitude. Start fresh today.

Recognize You Cannot Change Past Relationships

You may be caring for a person whom you had a  past conflict ridden relationship. This impacts your role as a caregiver. You need to closely examine its impact on you. Maybe you are not the best person to assume this role.

     

The biggest mistake caregivers make is not taking time taking care of themselves. You need to identify a person you can candidly talk to about the challenges of your caregiving experience. Another great source of support are caregiver groups or on line caregiver chat sites where you know others understand and have empathy for what you are experiencing. Finally, a healthcare professional with expertise in this area can offer counseling to help.


Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents.

Caregiver Identity: How Can You Survive and Keep It?

Caregiver Identity: How Can You Survive and Keep It?

This has been a stressful month. My disabled husband developed a horrendous rash, which he described as being attacked by ants. I had three infections and injured my back while lifting him. A manuscript I’d been working on disappeared from my computer, and back-up systems failed. I asked an office store to scan the manuscript to a file I could edit, but the file was such a mess, I gave up. The only thing I could do was retype the manuscript.

No wonder I developed a case of the blues. This wasn’t like me, and I was used to caregiving. In fact, I’ve been in the caregiving trenches for 20 years, nine years as my mother’s family caregiver, seven years as my twin grandchildren’s guardian and caregiver, and close to four years as my disabled husband’s caregiver, with more years to come.

I don’t know what is hardest about caregiving for you, but isolation and loss of identity are hardest for me. Although I counter isolation with emails, giving talks, and volunteering, they aren’t the same as personal contact. Besides, I have little time for these things. While I’m caring for my husband, I’m maintaining a writing career, and marketing my books. What’s my problem? Keeping my identity as a writer is a biggie.

A disabled person requires extra care. Even with two hours of paid care a day, I’m always behind. “I’m not trying to push you,” my sweet husband declares. His comment doesn’t make my task list any shorter, or give me an energy boost, or make me feel better. The “To Do” list is often a “Not Done” list.

The Caregiving, Mothering Mother and More blog discusses the identity problem in a post, “I Don’t Know Who I Am Any More: Losing and Finding Your Caregiver Identity.” The author is a mother, school director, writer, and family caregiver, a new role. This role included driver, health advocate, cook, and dedicated companion—a combination that made her feel like a dog “with a choke collar on a very short chain.”

Jack M. Rosenkranz, J.D. writes about identity in his article, “Caregiver Identity Theory,” published in the “Jewish Press of Tampa.” Caregiver identity theory originally came from Dr. Rhonda Montgomery and Dr. Jung Kwak, he notes. The idea behind the theory is that caregivers’ needs are multi-dimensional. “Caregivers themselves often require individualized plans to maintain their own health and quality of life,” he concludes.

Well, my plan is to keep writing books and articles. But publishing has changed. All publishers—traditional, independent, and hybrid–expect authors to market their work. This is a huge job by itself. Add that to caregiving and there are times when I feel like I’m drowning. However, when I see my books on the Internet, and hold them in my hands, stress and work hours are forgotten.

While wife, grandmother, and family caregiver are part of my identity, at this time of life, writing is most important. I’ve made some changes in my writing schedule, including getting up earlier, posting daily on the Internet, and taking online marketing courses. Writing is my self-care and salvation. What’s yours? We can’t let caregiving rob us of our identities. Keeping our identities makes us better caregivers!


Want to read more of Harriet’s writing? Check out her books.

About to burn out? Try this.

About to burn out? Try this.

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?

about to burn out? try thisFight 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.

Stay connected

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.

burnt out? here's the cure for caregiver burnoutKnow 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.

Hey, doc, what will that cost me?

Hey, doc, what will that cost me?

No matter how great your physician is, there is one question he or she is unlikely to answer: “How much will that cost?” It is not really doctors’ fault. Medical schools and residency training programs have traditionally shied away from teaching costs. For the most part, costs remain hidden even from many practicing physicians. Some would… (more…)

Stories of Hope are Essential to Palliative Care

Stories of Hope are Essential to Palliative Care

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.

Veteran Teaches Therapists How To Talk About Gun Safety When Suicide’s A Risk

Veteran Teaches Therapists How To Talk About Gun Safety When Suicide’s A Risk

Jay Zimmerman got his first BB gun when he was 7, and his first shotgun when he was 10.

“Growing up in Appalachia, you look forward to getting your first firearm,” he said, “probably more so than your first car.”

His grandfather taught him to hunt squirrels and quail. Zimmerman, who lives in Elizabethton, Tenn., said pretty much everyone he knows has a gun. It’s just part of the culture.

“When I went into the military, that culture was reinforced,” he said. “Your weapon is almost another appendage. It’s part of who you are.”

Zimmerman served as a medic in the Army in the late 1990s and early 2000s, with stints in Bosnia, Africa and the Middle East. Since he came home, he’s struggled with PTSD and depression. It reached a crisis point a few years ago, when his best friend — the guy who had saved his life in a combat zone — killed himself. Zimmerman decided his time was up, too.

“I decided that I would have one more birthday with my daughter, one more Christmas with my daughter,” he said. “I had devised my own exit strategy for 16 February 2013.”

But then he bumped into a woman who used to ride the same school bus when they were kids. His exit date came and went. They’re married now.

Zimmerman still gets depressed, but now he’s a peer counselor at the Mountain Home VA Medical Center in Johnson City, Tenn. He also travels to conferences all over the country, sharing his story with therapists and with other vets, encouraging them to ask for help when they need it.

Even today, he explains at these conferences, if he’s not doing well, he disassembles his guns and stores them separately from ammunition, so he can’t make any rash decisions. And if things get really bad, Zimmerman has a special arrangement with a few friends.

“I call them and say, ‘Look, I’m feeling like it’s not safe for me to have firearms in my home. Can you store them for me for a couple days till I feel like I’m OK to have them back?’ ”

Suicide is often an impulsive act. Nearly half the people who survive an attempt say the time between their first thought of suicide and the attempt itself was less than 10 minutes. But the method can mean the difference between life and death: People who take pills have time to change their minds, or may still be alive when discovered. That’s not the case with guns.

Almost 70 percent of veterans who commit suicide do so with a gun, which prompted President Barack Obama to order the VA to talk to vets about gun safety and storage options like the ones Zimmerman uses.

But here’s the trouble: Most therapists aren’t gun people. They don’t know how to talk about guns and so they don’t.

“One obvious reason for that is that no one has taught them how,” explained Megan McCarthy, a psychologist and National Deputy Director in the Office for Suicide Prevention in the U.S. Department of Veterans Affairs.

McCarthy was invited to speak recently at a suicide prevention conference in San Francisco, aimed at therapists who work with vets.

“How many of you would say you feel really comfortable having a conversation with any of the people you work with about limiting access to all lethal means?” she asked the roomful of therapists.

Hardly anyone raised their hand.

“OK, so that’s why we’re here today,” she said.

Researchers recommend starting with a field trip to a shooting range. There, therapists can learn about different kinds of firearms, as well as gun locks, and get an introduction to gun culture.

When counseling vets, therapists have to ask more questions and be less directive, McCarthy said.

“We often conceive of ourselves as experts — as people who impart information to clients,” she said. But with vets, “it may take time to build trust. Telling them what to do the first time you’ve met them is probably not going to be a very effective approach.”

McCarthy presented a case study at the conference: A 28-year old, unmarried Army veteran who fought in Iraq told his VA psychiatrist that he had an argument with his girlfriend last week. He drove to an empty parking lot and sat with his loaded handgun in his lap, intending to kill himself.

He didn’t do it. A week later, the man told his psychiatrist things were still tense with his girlfriend. But he didn’t want to talk about suicide or storing his gun.

McCarthy asked the clinicians in the audience what they would do next, if they were this man’s psychiatrist.

“Why did he not do it? That would be my question,” one therapist said.

“I would want to see this individual again, within the same week,” said another. “I believe in strong intervention.”

Jay Zimmerman, the former army medic and peer counselor, stood up and explained his different perspective.

“Chances are the reason he’s not talking to you is because he’s afraid he’s going to lose his gun that he carries pretty much all the time,” Zimmerman said. “My buddies are the same way. We all carry — all the time.”

A lot of veterans would sometimes rather confide in a fellow vet than someone in a white coat, Zimmerman said. And that was an unusual takeaway for the professional counselors: Sometimes their role is not to intervene at all, but to be a facilitator. To make sure vets have someone to talk to outside the therapy office.

By April Dembosky

This story is part of a partnership that includes KQED, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

How a Simple Fix to Reduce Aberrant Prescribing Became Not So Simple

How a Simple Fix to Reduce Aberrant Prescribing Became Not So Simple

Back in 2014, federal officials settled on what they thought would be a straightforward fix to curb abusive pill pushing: Require doctors and other health providers to register with the Medicare program in order to prescribe medications for beneficiaries.

That way, the government could screen them and take action if their prescribing habits were deemed improper. Officials figured the modest change would barely ruffle the medical community: Doctors already had to fill out an application, have their credentials verified and enroll to get paid by Medicare for seeing patients, after all.

But this fix, which followed a 2013 ProPublica investigation into questionable prescribing in Medicare, has yet to be implemented. The government now says it needs until 2019 to put it in place — 3 1/2 years longer than initially expected.

“It has definitely been much more challenging” than anticipated, said Jonathan Morse, acting director of the Center for Program Integrity within the Centers for Medicare and Medicaid Services, the federal agency that runs Medicare.

As a result, the government is still covering prescriptions written by doctors who have been kicked out of Medicare and even some who have pleaded guilty to crimes. Three New Jersey doctors who pleaded guilty in July 2013 to charges related to a bribery scheme continued prescribing drugs to Medicare patients the following year, a ProPublica review found.

One of those doctors, Franklin Dana Fortunato, told ProPublica that he was advised that he could continue treating patients between his guilty plea and his sentencing in May 2015.

In addition, at least 40 doctors kicked out of Medicare before 2014 had their prescriptions covered by Medicare’s prescription drug program, known as Part D, that year, a ProPublica analysis shows.

Much of the reason for the delay rests with dentists. Medicare, which provides health care to seniors and the disabled, doesn’t typically cover dental services, but the Part D program pays for drugs, such as antibiotics or painkillers, that dentists order for beneficiaries.

“Since Medicare covers very few dental item and services, many (perhaps most) dentists have little incentive to enroll in Medicare” outside of this requirement, the American Dental Association wrote to CMS in September 2016. The dental group also said the enrollment process is too complex and that CMS already has the information it needs to address fraud and abuse concerns.

ProPublica analyzed all providers who wrote at least 50 prescriptions for at least one drug in Part D in 2014. All told, more than 92 percent of the 428,000 providers were enrolled in Medicare. But among 18,500 dentists, almost the exact opposite was true: More than 82 percent weren’t enrolled.

“From their perspective, they’re basically saying to us, what incentive do they have to enroll,” said Morse, the head of program integrity for CMS.

Part D, which began in 2006, has received high marks from patients. It now covers more than 42 million people. But experts have long complained that the program places a higher priority on getting prescriptions into patients’ hands than on targeting problem prescribers. The Department of Health and Human Services’ inspector general has repeatedly called for tighter controls.

In 2013, ProPublica documented how Medicare’s failure to oversee Part D effectively had enabled doctors to prescribe inappropriate or risky medications, had led to the waste of billions of dollars on needlessly expensive drugs, and had exposed the program to rampant fraud. At the time, Medicare said it had no authority to take action against doctors or other providers even if it found their prescribing practices troubling.

Medicare’s response, finalized in May 2014, gave officials the power to kick health providers out of the program if their prescribing is abusive, a threat to public safety or in violation of Medicare rules. CMS said it would use prescribing data, disciplinary actions, malpractice lawsuits and more to identify problem providers.

To date, officials said, Medicare has only done so once.

But the plan to require that providers enroll in Medicare has been met by delay after delay after delay.

At first, CMS gave providers until June 1, 2015, to either enroll in Medicare or formally opt out. Either way, the government would have additional information about them. If they neither enrolled nor formally opted out, Medicare said it would no longer cover drugs they ordered for beneficiaries.

That was delayed by a few months and then by a year. In March 2016, the agency delayed the drop-dead date yet again—until February 2017.

Finally, in October 2016, CMS pushed it off until January 2019. Beginning this spring, it said it will block prescriptions from doctors who have been barred from participating in federal health programs, those ousted from the Medicare program for other reasons, and those convicted of a felony in the past 10 years.

The delays have enabled troubled doctors to continue prescribing—while still having their prescriptions paid for by Medicare.

A family practice doctor in Michigan, for example, was charged in December 2012 with conspiracy to commit fraud and illegally distributing a controlled substance. But he wrote 7,864 prescriptions in Part D in 2014. In fact, 41 percent of his Part D patients received at least one prescription for a narcotic painkiller that year. He pleaded guilty in 2015 and was sentenced to seven years in prison.

And in Georgia, a nursing home doctor kicked out of Medicare in February 2014 for “abuse of billing privileges” nonetheless wrote nearly 45,000 prescriptions covered by the program that year.

While CMS has delayed its enrollment requirement, it has begun to review the reams of data it collects to identify doctors with aberrant prescribing patterns. It sent a round of letters to doctors, alerting them to how they compared to peers, but a study in the journal Health Affairs last year found that the letters were ineffective at changing behaviors.

A second round of letters, which contained stronger warnings, has led to a small change in prescribing practices, Morse said.

“Rather than saying, ‘Hey we’ve noticed that you have this odd or higher than average prescribing behavior,’ now it’s much more ‘We plan to take action if your behavior does not fall into line with that of your peers,'” he said. “It has become more effective because the letter is more strongly worded.”

ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for their newsletter.

by Charles Ornstein, ProPublica

Music Therapy: Planning Ahead During Early-Stage Alzheimer’s

Music Therapy: Planning Ahead During Early-Stage Alzheimer’s

When a parent, spouse, or relative is diagnosed with Alzheimer’s, it can feel as if you’re starting an uncertain journey without any sort of roadmap. It’s a feeling that can persist even as the disease progresses. Often, caregivers look back during the later stages of Alzheimer’s and wish they’d taken earlier steps that would have made late-stage caregiving easier.

One particular area where this can crop up is music therapy for Alzheimer’s sufferers. In recent years, music therapy has been the subject of increased media attention and scientific research. There is now widespread anecdotal and data-driven evidence that music therapy is one of the most effective ways to reduce stress and improve the mood of Alzheimer’s sufferers, particularly those in the mid-to-late stages of the disease.

One of the biggest challenges to music therapy for Alzheimer’s patients is choosing the right music. That’s because the most effective music therapy programs use a patient’s favorite songs from their childhood, teenage years, and early adulthood. Even when late-stage Alzheimer’s has claimed other memories, the beat or hook of a once-familiar tune can dissipate stress, encourage cognitive activity, and transport sufferers back to the feeling of happier times.

If you are caring for a loved one with Alzheimer’s, it can be hard to find the right tunes for music therapy — especially if you start searching in the mid-to-late stages of the disease. By this point, it will likely be more difficult for your loved one to recall the artists and song titles they were most fond of growing up. More important, it will be harder for them to have the kind of conversations that make it easier to build a music therapy playlist.

If you have someone close to you who’s recently been diagnosed with Alzheimer’s, taking steps now could make it easier to care for your loved one in the later stages of their condition. To find the artists and songs your loved one responds best to, consider the following suggested steps and resources.

Start with Conversation and Research

The first place to start when researching a loved one’s childhood musical tastes is with conversation. Even if your loved one can’t remember all — or even most — of their favorite artists and songs from their early years, they will likely be able to remember a few that you can use as a launching off point.

It’s not necessary to have a single long and intensive conversation. In fact, it may depress your loved one to dwell on preparations for the progression of their illness. If this is the case, you may wish to have short conversations, or ask casually without bringing Alzheimer’s into the conversation. On the other hand, your loved one might enjoy the trip down memory lane, in which case you should feel free to mine their memories.

Once you’ve pinned down a few of their favorite songs and artists, you can turn to the internet for further research. These days, it’s easier than ever to explore a genre or decade of music. Whether you’re using links on Wikipedia, a music streaming service, an oldies satellite radio station, or a combination of all three, you can begin researching the sort of singers, bands, and songwriters that your loved one grew up listening to.

As a general rule, focus on the twenty-year period between your loved one’s fifth and twenty-fifth birthdays. Find out what kind of songs were on the radio at that time, and which artists were most closely associated with the ones your loved one enjoyed. You can use links between Wikipedia articles, suggested artists on streaming services, or whoever’s up next on the oldie station to make these connections.

kitchen radio with a cup of teaSee What Your Loved One Responds To

Once you’ve brainstormed a list of possible artists and songs, start putting playlists together to share with your loved one. Unless your loved one is invested in the project, don’t force him or her to sit down with headphones and a notepad. Instead, play the songs as background music while doing tasks together, during relaxing moments, or while driving in the car.

At this point, see how your loved one responds. If your loved one says they remember certain songs or certain artists, make a mental or physical note of which ones. If they seem to perk up at the sound of a particular tune, keep that song in mind for the future. If they’re humming along or bouncing their knee to the beat, that’s even better.

During these listening periods, you’ll start to get a better sense of which artists and genres your loved one connects with most. You can then start repeating this process, using the songs and artists your loved one likes to get a better sense of which other songs and artists they might be inclined toward. You can then go back to your research to brainstorm new songs to try out.

The more time you spend on this, the more you can become familiar with the music from your loved one’s earlier years. As you become better versed in the music of the time, you’ll be able to make smarter and more educated guesses about your loved one’s tastes. You might also find that you begin to develop a deeper bond with your loved one through this process, giving the two of you something to talk about that truly hits home.

Create Personalized Playlists for Music Therapy

Whether your list ends up getting narrowed down or dramatically expanded, you’ll soon be able to generate a full collection of songs for future music therapy. At this point, you can begin to put half-hour or hour-long playlists together, selecting the songs that you think will be most joyous or most calming for your loved one.

Of course, there’s no need to shelve this collection during the early stages of your loved one’s Alzheimer’s. If you’ve found that these songs have had a positive effect on your loved one, you should continue to play them and enjoy them together.

You may even wish to take more trips down memory lane. These days, it’s just as easy to research old radio shows or movies that your loved one may not have heard or seen for several years. While plot-driven narratives are hard to follow for mid-stage and late-stage Alzheimer’s sufferers, reliving these memories can be invaluable for those in Alzheimer’s early stages.

radio on console in living room of a hospice center

When the Time Comes, You’ll Be Ready

By doing this kind of legwork during the early stages of Alzheimer’s, it is easier to provide music therapy for a loved one when they reach mid-stage or late-stage Alzheimer’s. While this can be an extraordinarily difficult time for you and your loved one alike, it can be made easier if you’re able to provide your loved one with moments where he or she feels comfortable and at peace with the world.

At this time, it’s important to make sure that your loved one is comfortable when listening to his or her music. Consider investing in a padded pair of over-ear headphones, which can make it easier for your loved one to focus on his or her music. Also, remember that music played at loud volumes can be stressful or disorienting for those suffering from memory disorders. Make sure to test the volume of the music before playing it for your loved one and try turning it down if the volume seems to agitate him or her.

In addition to music therapy, there are a number of other therapeutic activities and exercises for those with Alzheimer’s. More and more Alzheimer’s caregivers are integrating art therapy and nature therapy into the care they provide for Alzheimer’s sufferers. These therapies — either in conjunction with music therapy or on their own — may also help you in caring for your loved one.


Larry Meigs, President & CEO of Visiting Angels

Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.

Tax Day Is Zero Hour For Health Insurance, Too

Tax Day Is Zero Hour For Health Insurance, Too

By Julie Rovner

Your federal income taxes are due April 18 and, likely for several million people, so is a fine for failing to get health insurance.

Despite a lengthy debate, Congress has not yet acted on a bill to repeal portions of the Affordable Care Act. That means the law and almost all of its regulations remain in force, for now.

For the majority of tax filers, who had insurance through an employer or government program for 2016, all they have to do is check the box on Form 1040 that says they were covered for a full year. That’s it.

Under a decision by the Trump administration, however, leaving that box blank will not get your tax return kicked back to you. The IRS under President Barack Obama also did not reject returns with the box left blank last year or the year before, but it had announced it would step up enforcement of what’s known as the “individual mandate” for tax year 2016. That plan was canceled under Trump’s executive order calling on federal agencies to “minimize the burden” of the health law.

Still, those who lacked insurance for more than three consecutive months, or who bought individual insurance and got federal help paying the premiums, need to do a little more work.

Those with no insurance or a lengthy gap may be required to pay what the federal government calls a “shared responsibility payment.” It’s a fine for not having coverage, on the theory that even those without insurance will eventually use the health care system at a cost they can’t afford and someone else will have to pay that bill.

Many people without insurance, however, qualify for one of several dozen “exemptions” from the fine. Nearly 13 million tax filers claimed an exemption for 2015 taxes, according to the IRS. The most common were for people whose income was so low (less than $10,350 for an individual) that they are not required to file a tax return, Americans who lived abroad for most of the year and people for whom the cheapest available insurance was still unaffordable (costing more than 8 percent of their household income).

The fine for 2016 taxes is the greater of $695 per adult or 2.5 percent of household income. Fines for uncovered children are half the amount for adults. Fines are pro-rated by the number of months you or a family member was uninsured.

The maximum fine is $2,676; that is the national average cost of a “bronze” level insurance plan available on the health exchanges. But most people do not pay anywhere near that much. Last year, said the IRS, an estimated 6.5 million tax filers paid a fine that averaged $470.

If you bought your own insurance from the federal or a state health insurance exchange and you got a federal tax credit to help pay for that coverage, you  also have to take a step before you can file your taxes.

People who got those tax credits must fill out a form that “reconciles” the amount of subsidies they received based on their income estimates with the amount they were entitled to according to their actual income reported to the IRS.

In 2016, 5.3 million taxpayers had to pay the government because they got too much in tax credits, compared with 2.4 million who got additional money back. But among those who underestimated their incomes and had to pay back some of those tax credits, 62 percent still received a net refund on their taxes.


Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Pharma Money Reaches Guideline Writers, Patient Groups, Even Doctors on Twitter

Pharma Money Reaches Guideline Writers, Patient Groups, Even Doctors on Twitter

The long arm of the pharmaceutical industry continues to pervade practically every area of medicine, reaching those who write guidelines that shape doctors’ practices, patient advocacy organizations, letter writers to the Centers for Disease Control and Prevention, and even oncologists on Twitter, according to a series of papers on money and influence published today in JAMA Internal Medicine.

The findings of the papers provide further evidence showing how conflicts of interest help shape health care, a subject ProPublica has explored through its Dollars for Docs series since 2010. (Check whether your physician receives money from drug or device companies through our news tool.)


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“The very way we all think about disease — and the best ways to research, define, prevent, and treat it — is being subtly distorted because so many of the ostensibly independent players, including patient advocacy groups, are largely singing tunes acceptable to companies seeking to maximize markets for drugs and devices,” researchers Ray Moynihan and Lisa Bero wrote in an accompanying commentary.

The papers published in the journal cover a variety of issues:

More than two-thirds of patient advocacy organizations that responded to a survey indicated that they had received industry funding in their last fiscal year. For most, the money represented a small share of their budget. But 12 percent said they received more than half of their money from industry.

Most organizations reported having a conflict-of-interest policy, but a much smaller percent said that their groups had policies for public disclosure of those relationships. Fewer than 8 percent of respondents said their group “perceived pressure to conform its positions to the interests of corporate donors or partners” and nearly 14 percent said their group had declined a contribution because of concerns about conflicts of interest.

“Although the amounts and proportions of financial support from industry are modest, the pervasive nature of industry support suggests the need for robust public debate about how to ensure that [these groups] serve the interests of their constituencies,” the authors affiliated with the Cleveland Clinic and other academic medical centers wrote. It called for greater transparency of funding sources by the groups.

Organizations that received funding from opioid manufacturers were less supportive of guidelines proposed by the CDC to limit prescribing of the drugs for chronic pain. More than 150 organizations formally submitted comments after the proposed guidelines were released in February 2016, and 80 percent of them were supportive, though some had recommendations for changes.

Among the 45 groups that received money from opioid makers, though, the level of support was only 62 percent. And none of those groups disclosed their funding sources in their comments. (The CDC did not ask or require them to do so.)

“More people are dying than ever before from these products and it’s important to know how the market is shaped by the spending of drug companies,” G. Caleb Alexander, co-director of the Center for Drug Safety and Effectiveness at Johns Hopkins University, said in an interview.

Two committees that developed guidelines for the management of high cholesterol and hepatitis C did not fully comply with standards set by the Institute of Medicine in 2011 to limit the number of industry-funded panelists. The Institute of Medicine required that fewer than half of guideline writers have commercial ties and that all chairs and co-chairs have no conflicts. But in both cases, at least one chairperson received money from industry and, in the case of the hepatitis C guidelines, a substantial majority of panelists also received money.

Moreover, the authors noted, when separate committees with no commercial conflicts developed guidelines for cholesterol and hepatitis C, the recommendations were more conservative and called for less expensive first line treatments.

Nearly 80 percent of U.S. hematologist-oncologists who use Twitter have financial conflicts of interest. The authors said their results raise questions about how conflicts should be disclosed and managed on social media. It recommended that, at minimum, physicians active on Twitter should disclose their industry funding in their biographies.

A preliminary analysis of tweets by these doctors, not yet published, has shown that “a sizable percentage are tweeting about drugs that they have specific ties to,” oncologist Vinay Prasad, one of the authors of the study and an assistant professor of medicine at Oregon Health & Science University, said in an interview. “Not a single one has disclosed so far, but we’ll find out.”

The pharmaceutical industry trade group, in a statement, defended the relationships between companies and other organizations.

“Industry engages with stakeholders across the health-care system to hear their perspectives and priorities,” said the statement by Pharmaceutical Research and Manufacturers of America. “We work with many organizations with which we have disagreements on public policy issues, including on prescription medicine costs, but believe engagement and dialogue are critical.

“While we cannot speak for particular organizations, we have heard from many patients who are concerned about the growing out-of-pocket cost burden when trying to access needed health-care services and treatments. In addition, there is broad recognition by the patient community of the significant unmet medical need that exists for many fighting devastating and debilitating diseases.”

Moynihan and Bero, the authors of the JAMA Internal Medicine commentary, wrote that their primary concern is that patient groups actually speak for patients. Recently, when Mylan came under widespread criticism for the price of its EpiPen, patient groups were largely silent.

“To ensure a healthier patient voice in medical research, education, policy and practice, sponsored groups that want to be seen as independent and credible need to decrease their industry sponsorship and ultimately disentangle, gaining in authority what they lose in resources,” they wrote.

ProPublica is a Pulitzer Prize-winning investigative newsroom.  Sign up for their newsletter.

by Charles Ornstein, ProPublica

Instant Health Benefits of Routine Activity for Seniors

Instant Health Benefits of Routine Activity for Seniors

Staying active fortunately doesn’t have to mean hitting the gym every day. Activities for seniors, from volunteering to swimming, moderate hiking, even simply getting out of the house to grab lunch with a friend can have immediate health benefits. Caregivers looking to optimize their loved one’s overall physical and mental health will be thrilled by these tangible benefits of routine activity:

  1. Physical Wellness: In addition to promoting a strong immune and digestive system, regular exercise in old age can help fight illnesses like heart disease, obesity, high blood pressure, dementia, Alzheimer’s, and colon cancer to name a few. Is the person your care for experiencing minor back or knee pain? Staying active with low-impact physical fitness helps stretch your spine, reduce muscle inflammation and improve circulation, which in turn, can alleviate aches and pains. The benefits of physical activity far outweigh the risks for older people, but if you are concerned about injury, consult your doctor and encourage your loved one to start with gentler physical activities like daily walks, yoga, tai chi, or water aerobics.

 

  1. Positive Attitude: Both exercise and socializing with friends triggers an endorphin release in the brain, promoting self-confidence and overall happiness as well as reducing feelings of sadness and anxiety. Volunteering in the community is a great way for seniors to stay active and is also proven to help people feel more socially connected, combatting feelings of loneliness and isolation that can often accompany old age. If the person you care for is feeling depressed, angry or generally grumpy, striking up a routine of some type of activity daily, like a 20-minute walk, or a stretching session to a playlist of their favorite songs, both gives them something to look forward to as well as promotes endorphin production.

 

  1. Mental Clarity: For seniors, “staying active” doesn’t just refer to the body, but the brain too. Routine activities should include those which stimulate positive brain function, thus enhancing critical thinking and preventing cognitive decline. Solving puzzles or playing thinking games regularly, like Sudoku, Chess or Scrabble, encourages your loved one to multi-task, and use creativity, problem-solving skills and memory. Stave off dementia, memory loss, and Alzheimer’s with physical exercise too, which boosts blood flow to the brain and has been shown to promote cell growth.

 

  1. Better Sleep: Getting out, exercising regularly, and staying active can help your loved one fall asleep faster, get a better night’s sleep, and wake up more rested and alert. Better sleep then cyclically feeds into a desire to be more active as well as promotes better brain function. As a caregiver, are you concerned about your loved one falling? Exercise and healthy amounts of sleep can boost your loved one’s mobility, coordination, and balance which means reducing their risk of falling. A win-win!

 

  1. Sense of Security: When it comes to routine activity and providing a sense of structure and security for your loved one, “routine” is the key word. For caregivers and those they care for, following a daily set schedule that involves some type of physical activity is paramount. Taking meds at the same time each day, exercising and eating meals around the same time each day, and waking up and going to bed around the same time each day help people, especially the elderly, feel less stressed and sleep better.

 

For caregivers, the resources to help your elderly parent, grandparent or friend whom you care for aren’t always in abundance. Daily activities might require transportation you can’t provide, or time you simply don’t have because of a job or other obligations. Prioritizing regular exercise and activity that so greatly benefits senior citizens is easier with the help of other family members or friends who are willing to pitch in.

Consider organizing a care calendar where your loved one’s support network can sign up to transport them to the local senior center for tai chi class, to take them out for a walk, or to bring lunch over and do puzzles together. Online coordination tools like CaringBridge and SignUp.com provide free online signups and calendars for you to organize help. And local agencies and caregiver networks may offer free transportation or daytime activities for your elderly loved one as well. Do your research and don’t forget, keeping your favorite senior active will effectively make life better for them and you!


Jessica Hegg

Guilt vs. Grace

Guilt vs. Grace

In the face of overwhelming odds, we put ourselves in an often impossible situation, and keep doing it armed with little else than love—while spending blood, sweat, and treasure. I wouldn’t hang around somebody who treats me the way I treat myself, and I’ll bet you wouldn’t either. We treat ourselves mercilessly—thinking somehow because of guilt or whatever, we’ve got to push ourselves to the breaking point.

We’ve all heard the story of military drill instructors who look at a line of soldiers and ask for a volunteer. Then, everyone steps back—except the one guy who wasn’t in on the planned exit. He didn’t step back.

As caregivers, WE didn’t step back. We show up every day. Sometimes we do it well—other times, we make mistakes. Either way, our attendance record is perfect even if our service record isn’t. Regardless of what we do or don’t do, we still beat ourselves up because we didn’t do it as well as we think we should—or somebody else thinks we should.

There is a word for caregivers to remember: Grace. To me, Grace is the most beautiful word in the English language. I married a woman named Grace. I love saying her name. As caregivers, we rarely give ourselves grace—to our detriment. Healthy caregivers make better caregivers, and we cannot exist in a healthy state when carrying the crushing burden of guilt.

This kind of caregiver guilt isn’t about sins that get great press. Those things earn guilt. Rather, this type of guilt comes when a child is born with a disease or disability—or even something as simple as wanting to take a break for a day …or even a few hours. The list of things we punish ourselves for stretches beyond the horizon, but none of those things help us live a healthier life.  We’re no good to anyone if we stroke out or become impaired ourselves by pushing ourselves to the breaking point.

Today is a good day to be a healthy caregiver, and that journey starts with extending grace to ourselves.

Laughing Until You Die

Laughing Until You Die

Humor May Be Antidote For Pain Of Death For Patients, Survivors

Just weeks before Christmas some years ago, Shirley Rapp and her family faced the devastating news that she had what appeared to be a terminal illness.

But that didn’t stop Rapp from wanting to do one last round of Christmas shopping for her kids. Her daughter, Karyn Buxman, a self-described neurohumorist and RN, went along. When the mother-daughter duo stepped into a St. Louis-area stationery store, Rapp picked up a day planner that she admired, turned to her daughter and quipped: “If I make it past Jan. 1, will you buy this one for me?”

That’s when Mom and daughter burst into laughter that attracted every eye in the store.

For some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations.

An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.

“Laughter is the best medicine,” says Mary Kay Morrison, president of the Association for Applied and Therapeutic Humor, “unless you have diarrhea.”

Humor is particularly important when folks near end-of-life situations, says Morrison. Turning 70 hasn’t stopped her from engaging in activities specifically to make her laugh — like hopping on her pogo stick. “While death cannot be cured, your frame of mind is something that you can change.”

Her group has some loose guidelines for the use of humor among the dying. Most critically: Make certain that you know the ailing person very well before using humor with them.

On its website, the National Cancer Institute urges patients to build humor into their day-to-day lives, in ways as small as buying a funny desk calendar and watching comic films and TV shows.

Buxman, who earned a lifetime achievement award from the AATH, gives speeches on the importance of life’s comic moments. A former hospice nurse, she takes humor very seriously. She has studied the impact humor has on the brain and on the stress levels of patients in their final days. The right humor at the right time, she says, can infuse the brain with pleasurable hits of the stimulant Dopamine, decrease muscle tension and anxiety in the body’s nervous system, and momentarily diminish feelings of anger or sadness.

As it turns out, her mom survived her initial illness — only to later develop a fatal form of Alzheimer’s. Near the end, Buxman took her mom to the doctor’s office — at a time her mom had stopped responding to most external stimuli. While sitting in the waiting room, Buxman could hardly believe it when her mom uttered, “Make me laugh.”

Buxman knew this was the time to share a funny, family memory. She recounted to her mom the story about the time the two of them visited the kitchen section at a large department store and saw a display of frying pans cooking what appeared to be artificial eggs. “This food looks so real,” her Mom said, poking her finger into the fake food. But the egg was real, and when the yolk popped, it oozed all over Rapp and the display.

“As I recounted this story, Mom’s face moved and her eye’s sparkled — and the two of us just doubled-over with laughter,” says Buxman. “Even near death, we can still communicate to the most primitive part of the brain — with laughter.”

But family-related humor isn’t only acceptable in terminal situations — it’s often helpful.

Just ask Paula McCann, an elder attorney from Rutland, Vt., who writes the blog onthewaytodying.com. She recalls when her then 83-year-old father, John, who was diagnosed with Alzheimer’s, requested to die at home. His children and wife took turns caring for him. One evening, McCann sat with her mother at her father’s side, shortly after he had been administered his last rites. Mother and daughter started to discuss where his soul was at that moment. McCann suggested to her Mom that perhaps it was in a holding pattern, while God reviewed the right and wrong he’d done, before allowing him into heaven. That’s when her mother quipped, “He’ll be there forever.”

A sense of humor about all of the drugs patients deal with at life’s end, helped Ronald Berk, former assistant dean at John Hopkins University, through a rough patch. His wife, Marion Smith-Waison, a former OBGYN doctor, was very ill before her death 18 months ago. She had scheduled a meeting at their home with folks offering holistic medicines. When Berk entered the room, a drug counselor asked him, “Are you taking any medications?” Berk shot back, “Yes, I was taking crack — but I gave it up for lent.”

Berk insists humor at that stressful moment offered a critical “release valve.”

Chip Lutz, a professional speaker who retired from the Navy years ago, recalls the importance of shared humor before his father, Eugene, died last year. Trying to squeeze an extra hug out of visiting family members, Eugene often cajoled them with, “Well, this might be the last time you see me.”

But Eugene’s son, Chip, had the perfect response. “You can’t die yet — I don’t have your eulogy done,” he shot back.

Few people hear more morbid jokes than hospice workers. Several years ago, Allen Klein, an author and motivational speaker, volunteered at a hospice in the San Francisco Bay area. An elderly woman he was assisting told him that after she died, she wanted her husband’s bedroom repainted — with her cremated ashes mixed into the paint.

“Why would you want that?” inquired a confused Klein.

“So I can look down at my husband and see if there’s any hanky-panky going on.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

The ‘Troops’ Who Support Our Troops

The ‘Troops’ Who Support Our Troops

In 1983, a ground-breaking white paper by then-Chief of Staff of the Army General John A. Wickham Jr. on the importance of increasing support to the Army family put into motion the Army Family Action Plan, or AFAP. General Wickham asserted that a healthy family environment allowed soldiers to more fully concentrate on their mission, so… (more…)

What Hospitals Waste

What Hospitals Waste

ProPublica Share on Facebook Share on Twitter Comment Donate What Hospitals Waste The nation’s health care tab is sky-high. We’re tracking down the reasons. First stop: A look at all the perfectly good stuff hospitals throw away. by Marshall Allen, ProPublica Photos by Tristan Spinski, special to ProPublica March 9, 2017 Just outside Portland, Maine, there’s… (more…)

‘Tsunami’ Of Alzheimer’s Cases Among Latinos Raises Concerns Over Costs, Caregiving

‘Tsunami’ Of Alzheimer’s Cases Among Latinos Raises Concerns Over Costs, Caregiving

Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.

She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.

But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.

Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.

With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.

Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.

“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”

That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.

Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.

“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”

About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.

Between 1999 and 2008, the number of elderly Latinos living in U.S. nursing homes grew by about 55 percent, a rate that outpaced the growth of the overall Latino population during that time, according to research published in July 2011 in Health Affairs.

That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.

For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.

Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.

She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.

Dwindling Resources

The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.

They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”

The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.

Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.

Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.

When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.

So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.

Asking For Help

Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.

Free or low-cost programs like these are available in many communities, but families need to do research and ask for help, said Constantina Mizis, president of the Chicago-based Latino Alzheimer’s and Memory Disorders Alliance.

The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.

When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.

There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.

In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.

A Push For Awareness

Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.

Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.

Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.

“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.

Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.

“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”

As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.

Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.

In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.

Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.

Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.

“This is why it is so important to invest in the education of these communities,” Mizis said.

Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.

“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”

By Ana B. Ibarra and Heidi de Marco

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

How life insurance can pay for long-term care

How life insurance can pay for long-term care

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.

The Most Important Things You Need To Understand About Your Parents’ Medicare Coverage

The Most Important Things You Need To Understand About Your Parents’ Medicare Coverage

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.

Ask Questions

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

Death Doesn’t Have To Be So Scary

Death Doesn’t Have To Be So Scary

Since he watched his mother drop dead, Richard Bridgman’s fear of death has left him emotionally paralyzed.

It was right around Thanksgiving — nearly 45 years ago — and Bridgman was sleeping overnight on his mom’s living room couch.

“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be okay. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”

Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Ill., area, he has spent most of his adult years trying to cope with — if not overcome — his immense fear of death.

“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”

Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where time is commonly measured in 140 characters and 6-second sound bites, life would appear to be dissected into so many bite-sized morsels that discussion of death doesn’t even seem to fit into the equation.

Kelvin Chin (Courtesy of Kelvin Chin)

Kelvin Chin (Courtesy of Kelvin Chin)

“Everybody has a fear of death, no matter what culture, religion or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death” and founder of the Overcoming the Fear of Death Foundation and the non-profit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”

But wait. What if death isn’t actually unhappy? What if it simply — is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to emotionally deal with death. That question was posed to him by Chin, who he discovered via a Google search. Several supportive phone consultations with Chin — combined with a simple meditation process that Chin teaches — have helped to keep Bridgman’s fears under control.

“I spent so much money on psychiatrists and psychotherapists — none of them did any good,” says Bridgman. But Chin steered Bridgman towards meditation. “Meditation is better than medicine,” Bridgman said.

Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.

“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”

“Very few people die screaming. They just go to sleep.”

But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was two years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.

Donna Authers (Courtesy of Donna Authers)

Donna Authers (Courtesy of Donna Authers)

It was Authers’ grandmother — while dying from cancer — who taught Authers the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days. But her grandmother could sense her granddaughter’s terrible fear.

That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve. “I was no longer afraid of death and dying,” recalls Authers.

Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.

Increasingly, however, Chin has found that Millennials — more than any other demographic — fear death the most.

“It’s the downside of social media,” said Chin. “The bombardment and speed of communication leads to an overload that can trigger a fear of death.”

Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”

In times of political upheaval— particularly when people are reminded of their mortality — the fear of death increases even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.

“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”

Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.

A terminally-ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.

“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

The End of Regret

The End of Regret

Unfortunately for many of us, the pain of losing somebody we love, or people we have had a mixed relationship with, can be made worse by the presence of regrets. Mourners can be left struggling with thoughts like, “What could I have done differently?” “I wish I had gone to visit him or her more often.” “We were not very close, and now we never will be”.

When grief situations are touched with regret, each mourner must search for a way to find peace within themselves. Obviously events, words and actions that occurred in the past, can not be changed. There are two main options available when dealing with regret, either suffer indefinitely, or find a way to forgive oneself and perhaps make changes about how to behave in the future.

People whom have spoken too often in anger may resolve to become more diplomatic and patient in their communication. Those suffering because a person they cared about died without knowing how much they were loved or respected can choose to become more expressive. If saying intimate things is unfamiliar to you, perhaps writing a letter or even a song or poem may be easier.

If you wish you had visited more often when a loved one was alive, look around at friends and family members still living and reach out more regularly. When physical distance is an issue using emails, phone calls, Facebook or sending cards can still be very satisfying.

Some mourners are able to forgive themselves for past disappointments more easily by writing a letter to the deceased and saying how they feel now. Others can make a financial contribution or volunteer time to an organization that their loved one would have supported.

 

If you are struggling with regret, it is vital to understand that you can only change your current self and future behavior.

Ready to avoid future regrets in the future? Try this healing technique called: Choose 5 Memories

People who tend to be aggressive or unappreciative with loved ones could benefit from this healing technique designed to reduce accumulated tension: Transition 10

Many of us are so stressed out or overwhelmed by our daily responsibilities that our behavior becomes less skillful. This article about ‘Avoiding Caregiver Burnout‘ may help.

One of the hardest circumstances for grievers to recover from can be losses due to suicide. If you or someone you know has been effected by suicide, please forward them this information about a great organization called: The American Foundation for Suicide Prevention

As always, please share any comment, suggestions or advice with our other readers in the comments section below.
Best wishes to you,
Margo Rose


Republished with permission from Body Aware Grieving.

Too many notifications?

Too many notifications?

Our private Facebook groups are pretty active, so you might find they take over your Facebook news feed.

Don’t worry, there’s an easy solution.

Find a post from the group that’s taking over your news feed and click on the little triangle in the upper right corner to reveal a menu.

how to unfollow a facebook group

By “unfollowing” a group, you’re still a member of the group, but posts from that group won’t appear in the news feed anymore.

In order to participate in the group conversations, you can add a shortcut. Go to the group you want to create a shortcut for. In the upper right there’s a button with “…” that will reveal a menu. Choose “pin to shortcuts.”

add a facebook shortcut for a group

Now a shortcut for the group appears on the left side of your Facebook account.

facebook group in shortcuts menu

When there are new posts to your group, a number will appear next to it. This way you can stay a part of the conversation without getting constant notifications or filling up your Facebook news feed!

When family caregivers could take a year off – with pay

When family caregivers could take a year off – with pay

A friend of mine in Brussels casually mentioned how she’d wanted to take a sabbatical, but the new government had changed the program. She’d hoped to take some time off to work on personal projects, but she worried about what would happen to people who relied on a sabbatical to take care of relatives. What would they do now that the program provided no financial support?

Her comment really piqued my interest — what programs are available to family caregivers in Belgium?

Belgium’s time credit system

In Belgium employees were able to take a tijdskrediet / crédit-temps or ‘time credit’ while collecting most of their regular salary. To be eligible they had to have worked full-time for two years and at least one full year for their current employer. Employees can take up to a full year off or can work half-time for slightly longer than a year. They can also work 80% of the time for up to 5 years, or longer if the employer agrees to it. At the end they would be able to get their job back or return to full-time work. Employees could do this for a maximum of three years during their working life.

Who pays?

The government would cover most of the cost, with the employer covering a ‘supplement.’ The employer cannot deny an employee’s request for a sabbatical without a serious business reason. In a country where the social safety net makes it expensive and difficult to reduce the workforce, sabbaticals can be a way for a company to reduce their expenses while encouraging their employees to take care of their families and pursue interests. This was also seen as a way to get people back into the workforce, as it increased the number of available temporary job opportunities.

Encouraging work/life balance

Employees who are ill, have a new child, or have an ill relative are all encouraged to take a sabbatical. The government has introduced tax incentives to encourage people to outsource household tasks, like cleaning, cooking, and childcare. This is intended to reduce stress on working women and turn unpaid work into paid career opportunities. Overtime pay must be paid to people who work over 39 hours per week. Still, many more women work part-time than men in Belgium.

The history of time credits

The time credit system was introduced in 1985, as a way to reduce unemployment and address work/life balance. Employees could interrupt their careers for family obligations, education, personal projects, or any reason at all. Employers were required to hire an unemployed person during the sabbatical, bringing many people back into the workforce.

In 2002 the law was changed so employers were no longer required to hire an unemployed person to fill the position during a sabbatical. Trade unions have generally supported the sabbatical system as long as employees were taking work reductions voluntarily.

The option to work 80% of the time has become very popular among men and women over the age of 50, who are very likely to be providing support for their own parents as well as grandchildren.

In January of 2015 the time credit system was changed so that the National Employment Office no longer covered any of the employee’s salary. Employees can still take time off for a sabbatical, but they have to do so without pay. Older persons wishing to reduce their hours indefinitely to ease into retirement must now be 60 years old.

Luckily, Belgium provides other support for the 12% of the population providing family caregiving. Of the elderly in Belgium, 82% have an informal caregiver.

Paid family caregiving

Family caregivers in Flemish Belgium are provided with allowances. The amount of financial support and eligibility criteria are different for each region. There’s also a small payment intended to cover out-of-pocket expenses, which averages 30 euros per month. Flemish Care Insurance is mandatory for all residents. In most cases, cash benefits provided are reduced if the household income is over a certain amount.

Anecdotally, because many people providing care don’t identify as caregivers, they don’t apply for financial support designed to help caregivers.

Caregiver support

In addition to sabbaticals, family caregivers have access to:

  • Palliative care leave for terminally ill parents (2 months + 1 month extension, with 750 euro/month)
  • Medical assistance leave (up to 12 months, taken in 1-3 month increments, with 750 euro/month)
  • Emergency leave (10-45 days/year)

Caregivers in Belgium have access to training through nonprofit organizations. There is no centralized service for respite care and counseling, although these are available to most people. Like the US, most services are designed based on the location and condition of the person receiving care.

Because 99% of the population is covered by compulsory health insurance, patients face limited health care expenses. However, these expenses can still be a serious burden on families. Home care is covered for low-income families and on a per-diem basis.

Disabled people in Belgium are given a dependence allowance and a personal assistance budget, which are meant to assist with caregiving expenses. However, these funds are used at the discretion of the care recipient. Care recipients are also eligible for an income replacement payment and other allocations.

Like caregivers in the US and Canada, caregivers in Belgium are hesitant to use the respite care available to them because of feelings of guilt, objections from the care recipient, and fears of loss of privacy.

Social Entitlement credits

Belgium worked to create a legal definition of family caregiving from 2008, passing the law in May 2014. The goal is to provide tax benefits for caregivers and social security credits for time spent providing care. This could also provide family caregivers with specific rights and workplace protections.

Thankfully, even self-employed persons in Belgium are entitled to caregiver support and sabbaticals.

 

Belgians are legally obligated to provide for their elders and the average nursing home cost exceeds the average pension payment.

Family caregivers in Belgium suffer from fragmented information sources and a lack of continuity in care. One survey of family caregivers in Belgium of people with mental health issues found that 1 in 4 were dissatisfied with the support they received from their workspace.

Would you like to see these programs extended to the US or Canada? Do you think they would work in another country? Have you provided care for a loved one in another country?

How do you know if someone is dead?

How do you know if someone is dead?

[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…)

The Challenges of Caring for a Loved One With Memory Loss in a Hospital Setting

The Challenges of Caring for a Loved One With Memory Loss in a Hospital Setting

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.

The 5 Easiest Ways You Can Help Your Loved One Stay Safe In The Bathroom

The 5 Easiest Ways You Can Help Your Loved One Stay Safe In The Bathroom

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.


Jessica Hegg