It’s June –  Alzheimer’s and Brain Awareness Month. Did you know that? If not, no worries. I’m here to tell you all about it. Alzheimer’s and Brain Awareness Month is a time to help raise awareness about a disease that affects millions of people world-wide. Though researchers know a lot about Alzheimer’s, they still don’t have a cure, which makes the disease still a mystery. That’s why purple is the color designated to Alzheimer’s, because it symbolizes mystery. But purple also represents magic, and it is that magical day millions of us are waiting for, the day when we can say with confidence that Alzheimer’s no longer exists, that it is no longer a threat to us or our loved ones. During the month of June, the Alzheimer’s Association encourages us to wear purple, to spread a purple light in honor of all affected by this life-robbing disease.

To learn more about Alzheimer’s and Brain Awareness Month,  I encourage you to read this past Sunday’s special section of the Burlington Free Press. Here you will find my article, “Agitation in Alzheimer’s, about the latest research involving an investigational medication to help reduce agitation in those living with the disease. In the 31-page section, you’ll also find personal narratives about individuals with Alzheimer’s, stories about the role of caregivers, support services available, and the community’s efforts to raise awareness.

Happy June!

Wear purple; wear hope.

“The sky is already purple; the first few stars have appeared, suddenly, as if someone had thrown a handful of silver across the edge of the world.”

― Alice Hoffman, Here on Earth

This past Saturday, at least fifteen thousand people marched through downtown Montpelier, Vermont, in the name of women’s rights, human rights, compassion, unity, and equality. I was among the thousands who sloshed through mud puddles and climbed over snow banks, each one of us determined to stamp out hatred and bigotry.

I’m not one for crowds, especially large crowds; if you have an anxiety disorder, like PTSD, you know what I mean. But I packed my Xanax – just in case – and drove the 40 miles with my step-daughter (thank you Rachel for being there with me) from Burlington to Montpelier, waited in five-miles of backed up traffic on the interstate before making an illegal U-turn (I can’t tell you how good it felt to break the law!) so we could exit onto an alternate route leading into town, then parked a mile from the state house. From there, Rachel and I took our first steps toward the center of inclusivity: the golden-domed state house.

Montpelier may be the smallest capital in the nation, but our voices here in Vermont are far from small. Yesterday, as we marched together, thousands waved signs reading, “Yes we still can … We should all be feminists … We the people … complacency is complicity.” We sang and chanted and shouted against oppression and injustice. We spoke out loud for what is right: helping the homeless and the poor, treating with dignity women, people of color, Hispanics, Jews, Muslims, gays, LGBQTs, the young and the old. And the disabled.

I give the disabled a sentence of its own, not because I believe they’re superior to others; I do so because I know too many disabled people, mostly those who have sustained traumatic brain injuries (TBI) and are now living with chronic side-effects, such as vision difficulties, chronic anxiety, sleep disorders, and rip-roaring headaches. Due to their injuries, some find it difficult to engage in substantial gainful activity, a social security disability insurance (SSDI) term meaning your medical condition prevents you from doing more than “insignificant” work. And if your disability prevents you from working twenty hours or more a week, the typical threshold for receiving employer-based benefits, this likely outcome is this: no health insurance. With the enactment of the Affordable Care Act, though, those with disabilities had options, and they didn’t have to worry about being discriminated against for having a pre-existing condition (a TBI for instance). The ACA offered increased accessibility to community health centers, and enacted a provision that axed annual and life time limits – a godsend for people with disabilities. For those who receive SSDI and Medicare under the program’s guidelines, they are (or should I say “were?”) protected.

But it’s 2017, and winter has arrived. “He who must not be named” plans to eviscerate the ACA, with no alternative other than the ambiguous executive order he signed just hour after he was inaugurated directing federal agencies to relieve individuals, state governments, businesses, and health insurance companies from “burdens” placed on them by the ACA.

Whatever that means? In the meantime, there are nearly 50 million people in the U.S. who have a disability, and about 8.8 million who receive SSDI benefits. Though “he who must not be named” promises Medicare for All, this is sheer talk from a man who, well, likes to talk. And, of course, “he” has to deal with the Republican controlled congress. What do the millions receiving Medicare under SSDI benefits – and those sixty-five and older – have to look forward to?

I wish I had a magic wand to make it all better, but I don’t. Yet, I do have my voice. I share my voice with you, sing and chant and cheer for you, keeping in mind the words that Martin Luther King Jr. spoke in 1965: “Our lives begin to end the day we become silent about the things that matter.”

The more we speak, the louder we speak, “about the things that matter,” the closer we come together, marching forward toward human progress and shaping a world in which every single one of us matters.

I like to believe that I’m too young to think about who will take care of me when I’m old and frail and can no longer prepare my own meals, bathe myself, or even tie my own shoes. But my father’s personal narrative has taught me to plan ahead: I now have an advance directive, and hope to have enough money set aside for long-term care costs, like an assisted living, or, do I dare say it? Nursing home. A place that most of us hope to avoid. We remind our loved ones, over and over, “Never, ever put me in a nursing home.”

My father spoke those exact words to me, time and again, in the years before he was diagnosed with Alzheimer’s, at age seventy-one, though he punctuated them with what might as well have been an exclamation point: “If you do, I won’t live a year.”
I wanted to guarantee my father that I would never “put” him in a nursing home. As his health care proxy (HCP), I did all I could to follow through with his documented wishes: “It’s my expressed desire not to be placed in an assisted living facility, or nursing home, or any other institutionalized living arrangement.” During the early phases of my father’s Alzheimer’s, he was able to stay at home with a paid companion a few hours a week. But as his disease progressed, he required full time care, twenty-four hours a day, seven days a week.

He didn’t have a wife to care for him. I live in Vermont with my husband, my older sister lives in California, and my younger brother and his wife have demanding jobs, with two young children in tow. None of us could have easily packed away our lives and moved in with our father; we had to hire a home care agency. But no way could the three of us afford the exorbitant cost of upwards of $14,000 a month for trained home care staff and case management services. This is when we cashed in on my father’s foresight: Because he’s a perennial over thinker, and could afford it, he had purchased long-term care insurance (LTC) – a policy that covers personal care in the home or institutional setting – years earlier. We managed, barely though, to keep my father at home for three years. Yes, the inevitable happened, and he’s been in a nursing home for a year now – a nice nursing home with attentive staff, decent food, lots of activities, a flower-bordered patio, and a pastel-painted dining room with tall windows.

But what happens to those who can’t afford the prohibitive price for long-term care insurance, or the out-of pocket costs for home care services – services typically not covered by insurance – or the fees for a nursing home? In the U.S, with the older population – people sixty-five and older – at nearly close to fifty million, which is predicted to nearly double to an eye-popping ninety eight million by 2060, I imagine those kinds of questions are being asked at a lot of dinner tables. My husband, his siblings, and I, ask one another those questions as we scramble to piece together a plan to care for his eighty-eight-year-old mother, who is blind in one eye and has dementia. Her dementia is at a stage where she doesn’t need to be in a nursing home or an assisted living facility. But she no longer drives, and needs assistance preparing some meals and doing household tasks, she is also at high risk for falling. But she doesn’t have the funds to pay for home care. That leaves her with one option left: family. For now, one of her sons, who recently resigned from his job, is living with her full-time. But that’s not sustainable, financially or emotionally, for her son. Fortunately, my husband comes from a large family, and his siblings are willing to sign up for shifts.

Here’s why having family available to help is a saving grace: Taking into account three types of care – assisted living, independent living, and memory care – the average monthly cost in the U.S. is nearly $4,000. The Northeast is the most expensive in the nation: just over $5,000 a month. The average daily cost of nursing home care runs about $250 a day for a private room, more than $90,000 a year. But nursing home care is a whole different animal from other types of elder care, and this is where it gets confusing: If you, or your loved one, need nursing home services on a temporary basis – due to an illness or injury – and you have Medicare, great, the government will pick up your tab, but, of course, only if certain requirements are met. And they’ll pay the full cost for only so long: exactly twenty days. For the next eighty days, you get to pitch in: about $130 a day. On day one hundred, Medicare is no longer an option. And they don’t pay for long-term nursing home care. If you can’t afford LTC, and you don’t have Medigap – a non-government insurance plan – and are not a veteran, that’s when you dig deep into your pockets, cash in life insurance policies, reach out to family, praying you haven’t done anything to offend them, or, to qualify for Medicaid, sell just about every last possession you own, including your house.

That’s why procrastination isn’t your best friend. Where do I start? You might ask. A Place for Mom, the largest senior living referral service in the U.S., offers tips on how to prepare for the kind of care you might need as you age. If you believe you’re immune to aging, even after reading this post, I should share with you what James Salter, author of All That Is , has to say: “Age doesn’t arrive slowly, it comes in a rush … You are the same and still the same and suddenly one morning two distinct lines, ineradicable, have appeared at the corners of your mouth.”

Since I can’t bear ending on a minor key, I’ll leave you with this: You have a voice, so don’t be afraid to use it. Speak out, share your concerns about the rising costs of long-term care, even if your voice is out of tune: As Joni Mitchell says, “The more out of tune voices the better.”

This above post was originally published on June 3, 2016 at Strategy Health Care

You’ve heard of “burnout,” right? Your work environment is making you miserable, so miserable that you feel unfulfilled, depleted of energy, stripped of all motivation to effect change in the workplace. If you’re a healthcare professional, undoubtedly, you know all too well about burnout. But then there’s “compassion fatigue.” While individuals working in any kind of job setting can experience burnout, compassion fatigue is unique to those exposed to trauma while working in a helping profession: nurses, firefighters, police. Because you’re in the helping profession, you feel the onus is on you to save peoples’ lives, to make them better, to alleviate their pain, so you sign up for extra shifts, and, if you’re a nurse, offer to take care of the sickest patients. But what happens when your patients have little, or no family support, or are constantly ringing the call bell, making demands (get me water, I need more pain meds, I need something to help me sleep)? You feel like Sisyphus – no matter how many times you push the boulder up the hill, it keeps rolling back down into your weakened arms. You’re worn down, irritable, angry. That’s compassion fatigue, when you can no longer muster the sympathy to care for your patients because you’ve been exposed to the same kinds of patients again and again, and have answered an uncountable number of call-bell dings, but the bells keep dinging, and you want to keep helping, but, at the same time, you want to run.

It’s worth noting, however, that compassion fatigue doesn’t necessarily mean individuals experiencing it lack compassion, not at all. They still care about their patients. Instead, as a nursing professor at the College of Nursing at University of Arizona says, compassion fatigue is more like feeling too “full,” and even suggests a different name for it: “emotional saturation.”

Not only are healthcare professionals at risk for compassion fatigue, though, family members caring for loved ones with, say, a traumatic brain injury or dementia, are at risk too. Even those who hear about another’s traumatic experience over and over again are affected. I bring these scenarios into the mix because, sadly enough, I suffered from compassion fatigue when I worked tirelessly to navigate my father’s emotional swings, and, as he slipped into Alzheimer’s, made sure he was safe at home because he had insisted he never be put in a nursing home. And I’m witnessing compassion fatigue again, as my husband and his siblings stumble then pick themselves each day, determined to keep their aging mother safe from the ravages of dementia.

But it is possible to care too much, so much that it hurts. When I say hurt, I mean really hurt, as in traumatized hurt. Being pre-occupied with others’ suffering can cause “secondary traumatic stress” for the helping individual. It’s not unusual to experiences symptoms of post-traumatic stress disorder: anxiety, hyper-vigilance, irritability, impatience, withdrawal, poor concentration, sleep disturbance, nightmares, the list goes on.

What’s the cure for compassion fatigue? Boundaries and self-care. In other words, set limits, say no even when you want to say yes, remind yourself to take time out, meditate, go for a walk, keep a journal, draw, listen to your favorite music, dance, do yoga, take a bath, read a novel, watch a funny movie. Watch the sun set. Watch the sun rise.

For more resources on how to evaluate whether or not you have compassion fatigue and how to prevent/treat it, go to compassion fatigue and healthy caregiving.

Are you concerned about how much you’re spending on health care? Are you wondering if the blood test, X-ray, or MRI your doctor recommends is absolutely necessary? Maybe you don’t make it a habit to discuss the pros and cons of testing with your doctor because, after all, he or she is your doctor and always chooses wisely what is best for you, right? I do trust my own primary doctor’s recommendations, because she listens to me, closely. And she carefully considers whether or not a test is needed, then explains to me the reasons for her recommendation. Here’s the rub: We have a conversation about evidence-based practices before making any final decisions. In other words, she engages with me, as a human being – someone with worries, fears, doubts, and needs. So why am I sharing this with you? Last fall my husband went to his primary doctor for a physical exam. A month later we received a bill from the hospital she is affiliated with; the charges for routine blood work were far greater than I had expected. Though we have health insurance, like most people, we must first fulfill a yearly deductible, which doesn’t include copays and coinsurance. When I asked a representative from the health insurance company how they arrived at the number my husband and I were responsible to pay, and who decides on the formula, he answered with what amounted to the following: hospital charge – some random number chosen by a faceless person = contracted rate – deductible – ten percent co-insurance. I had no choice but to reach for the Advil in the kitchen cabinet nearby.

There’s more. Health insurance company administrators treat people not as human beings but as fixed codes that should fit snuggly into pre-printed, micro-millimeter boxes. So, since my husband’s doctor advised him to take Vitamin D supplements, because his lab work showed it to be low, we received another bill charging us a nominal fee for what our health insurance called a “consult.” (That single blood test alone cost us a chunk of $125.29.) It didn’t matter that the “consult” took place during his physical – it didn’t fit into the insurance company’s pre-fab, coded square for “preventative care.” But isn’t that why we have physicals, not only to be examined, but also to discuss what measures we can take to improve our overall health? That sounds a lot like the dictionary definition of “preventative”: the branch of medicine concerned with prolonging life and preventing disease.” If my husband’s doctor didn’t speak with him about his Vitamin D level, how else would he have known that he needed supplements? Health care has become much like an a la carte menu.

Here’s the good news: A friend and author at Strategy Health Care, Dr. Gene Lindsey, led me to a handy resource when I reached out to him with my concern about health care costs. That resource is Choosing Wisely. Launched, in 2012 by Advancing Medical Professionalism to Improve Health Care (ABIM), the goal of Choosing Wisely is to encourage dialogue between providers and patients in an effort to prevent unnecessary medical tests, treatments, and procedures. A practitioner of cardiology for nearly four decades, and President and CEO Emeritus of Atrius Health and Harvard Vanguard Medical Associates, I trusted Dr. Lindsey’s recommendation, as much as I trust my own primary doctor.

Choosing Wisely offers lists of health-related topics created by medical specialty societies, and represents evidence-based recommendations providers and patients should discuss. Topics range from plantar fasciitis to cancer drugs. Each topic includes information about when tests and procedures are deemed appropriate. The recommendations should not be relied upon to decide health care coverage, but to provoke conversation about whether or not particular treatments are necessary.

While reading through the list on Vitamin D testing and supplementation, this is what I learned: Testing doesn’t improve treatment. Most of us have low Vitamin D levels, but not “seriously low levels.” It’s recommended that we get a little more sun, eat foods rich in Vitamin D, and if we don’t get a lot of sun or eat enough D-rich foods, we should talk to our doctor about supplements. According to Choosing Wisely, “Getting tests that you don’t need often leads to treatments you don’t need, or treatments that can even be harmful. For example, if you take too much vitamin D, it can damage your kidneys and other organs.” And “doctors are ordering tests six times as often as in 2008.” Of course, there are conditions that warrant Vitamin D supplementation, like osteoporosis, and any disease that damages the body’s ability to absorb the vitamin.

Take a look at Choosing Wisely, and look out for yourself, your body, your health, because it’s you that matters.