Helping Those Struggling with Chronic Illness, Loved Ones and Caretakers THRIVE through Creating, Connecting and Community…
Living with chronic illness doesn’t come with a set of instructions…. So we’ve pulled together a variety of speakers, including medical experts, alternative practitioners, spiritual teachers and healers, thought leaders, thriving artists who battle illness, online support networks and creative therapists, to address these relevant topics and more. Hear inspirational stories directly from other people who have gone through something similar – and learn exactly how they overcame their challenges, and what specific recommendations they have to help You go from surviving… to THRIVING. This free event is just for YOU!
TOUCHED BY LYME: “Like the devil was inside me,” says comedian of Lyme disease
Back when she was in college, actor and comedian Tori Piskin started having blurry vision and debilitating fatigue.
She says it felt like she was living in the movie The Exorcist. “Like the devil was inside of me—something was off.”
Eventually, she was diagnosed and treated for Lyme disease, but many symptoms lingered.
“Fatigue is the biggest symptom I still deal with…It literally feels like rocks are on you.”
Piskin talks about her Lyme disease experience in a video series called “Diagnosis Diaries.” The YouTube series is sponsored by Bustle, an online women’s magazine.
Watch Piskin’s diary entry here:
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
Are you ready for some Summer fun? It’s Christmas in July! How about making someone’s day brighter by participating in a card swap! You get to spread sunshine, have sunshine sent your way and there are prizes to win!
With everything going on in the world, who wouldn’t want to send sunshine to another in your home country or abroad. It’s a great way to meet new people and who knows it may come on the day you need it the most.
I’ve teamed up with some bloggers and businesses in the chronic illness bloggers community to help promote a great giveaway to celebrate Chronic Warrior Collectives FREE Christmas in July Spoonie Card Swap https://chronicwarriorcollective.com/card-swap
Entering and sharing the giveaway gives you the chance of winning a prize and helps promote small businesses-all from bloggers in the chronic illness bloggers community. Several bloggers have kindly also signed up to share this giveaway and you can also opt to follow them as an entry choice.
Dear pain warriors, Our Virtual Advocacy Day is here! We recognize that there is a lot going on in the world right now–including COVID-19 and racial injustice, which both urgently deserve attention. But as Congress prepares its budget for 2021, now is our best chance to ask them to fund key recommendations in the “Pain Management Best Practices” report, a roadmap for improving pain care nationwide. We’ve created three easy tools to help you participate, all from the comfort of home.
TAKE ACTION NOW
1. CallEven if you only leave a message or speak with an aide, this is the most effective way to get policymakers’ attention. The link below includes step-by-step instructions, phone numbers, and talking points. Feel free to paraphrase!CALL >>
2. EmailIf legislators get enough emails on the same subject, they start to pay attention. Our template email campaign takes less than two minutes to send! (We timed it!) You can customize the email and add some of your personal story if you’d like.EMAIL >>
3. TweetThis requires two steps! 1) Look up and copy down your legislators’ Twitter accounts here. 2) Generate a prewritten Tweet using the link below, and add their account names (using the “@” symbol). You can customize the tweet as you see fit.TWEET >>
MORE WAYS TO HELP
Our website also has fun graphics to share, a customizable template to print and fill out (pictured at left), and a link to watch Tuesday’s informational webinar, which reviewed the report and how to take action.VISIT THE ACTION CENTER >>
Congress requested this report be developed–now, they must follow through on its recommendations and provide funding for #aplanforpain. But they’ll only do that if they hear from their constituents. We have the tools. You have the power to create change! Thank you for your support. Please let us know if you have any questions, or if we can help you advocate in any way. Sincerely,
I’m sure you know several great advocates who make a difference in your life. Now is the time to nominate them for a WEGO HEALTH AWARD. Have a great day.
Melinda
Think about the advocates and influencers you see leading Facebook groups, posting inspiring messages on Instagram and memorable content on TikTok, blogging about their health journey, speaking up and giving insights to healthcare companies, presenting on national stages, and running Twitter chats.
Patient Leaders have started non-profits, published podcast episodes, and authored books – there is no shortage of Patient Leaders’ contributions to the world.
So let’s recognize as many of them as we can for their talents, contributions, and commitment.
🏆⤵️Click the link below to nominate top Patient Leaders:Nominate NOW! 🏆
Summer has arrived in Texas, today it’s going to be a cool 94 degrees. Yesterday hit 100 degrees and that was before the humidity factor. Have a great day, I’m so glad you stopped by today. Melinda
The global pandemic has devastated much of the nation’s economy. Unemployment is at unthinkable levels and every sector has felt the impact of this crisis, from large corporations and nonprofits to small businesses and schools. One could debate who has been hit the hardest—hospitals, retail, tourism, education—but the fact remains that except for Amazon, Netflix, Zoom, Clorox, Kimberly-Clark, and a few other companies that stand to benefit, times are grim economically.
I am not a scientist, so I won’t pretend to make predictions about the longevity of this virus, potential for a vaccine, or likelihood for a resurgence. Nor am I an economist, so I will not weigh in on whether this is a recession or a depression, and I will refrain from speculating on the long-term fiscal impact. However, I am an educator who has worked with students and families through the 9/11 tragedy and the 2008 recession. I have also seen the great disparity of educational resources, and the inherent inequities, that hold back many in this country. What I know to be true is that no matter when our country opens up, or how fast we bounce back, we need to think about how we stimulate our economy and workforce from the ground up. Guess where that starts? School counselors.
Access to Counseling
School counselors are on the frontline of supporting our nation’s young people as they move through their educational journey, but access to these supports is wildly unjust and inequitable and this has serious implications on the availability of post-secondary planning. While the American School Counselor Association (ASCA) recommends a ratio of 250 students per counselor, according to Department of Education statistics, the national average is 430-to-1. Jill Cook, the assistant director of ASCA explains that encouragingly “the number of school counselors has been rising and the ratio of students per counselor is the lowest it has been in over 30 years.” She says that this is thanks in part to initiatives on the state level like Virginia’s goal to reduce the ratio to 250-to-1, Arizona’s legislation to hire additional counselors (reducing their worst in the nation ratio of 903-to-1), and the Colorado School Counselor Corps grant program. Cook worries, however, that school budgets will be slashed as a result of Covid-19 and that counselor resources will be lost at a time when they are more important than ever.
The mental health crisis triggered by COVID-19 is escalating rapidly. One example: When compared to a 2018 survey, U.S. adults are now eight times more likely to meet the criteria for serious mental distress. One-third of Americans report clinically significant symptoms of anxiety or clinical depression, according to a late May 2020 release of Census Bureau data.
We know the virus has a deadly impact on the human body. But its impact on our mental health may be deadly too. Some recent projections suggest that deaths stemming from mental health issues could rival deaths directly due to the virus itself. The latest study from the Well Being Trust, a nonprofit foundation, estimates that COVID-19 may lead to anywhere from 27,644 to 154,037 additional U.S. deaths of despair, as mass unemployment, social isolation, depression and anxiety drive increases in suicides and drug overdoses.
But there are ways to help flatten the rising mental health curve. Our experience as psychologists investigating the depression epidemic and the nature of positive emotions tells us we can. With a concerted effort, clinical psychology can meet this challenge.
Reimagining mental health care
Our field has accumulated long lists of evidence-based approaches to treat and prevent anxiety, depression and suicide. But these existing tools are inadequate for the task at hand. Our shining examples of successful in-person psychotherapies—such as cognitive behavioral therapy for depression, or dialectical behavioral therapy for suicidal patients—were already underserving the population before the pandemic.
Now, these therapies are largely not available to patients in person, due to physical distancing mandates and continuing anxieties about virus exposure in public places. A further complication: Physical distancing interferes with support networks of friends and family. These networks ordinarily allow people to cope with major shocks. Now they are, if not completely severed, surely diminished.
What will help patients now? Clinical scientists and mental health practitioners must reimagine our care. This includes action on four interconnected fronts.
First, the traditional model of how and where a person receives mental health care must change. Clinicians and policymakers must deliver evidence-based care that clients can access remotely. Traditional “in-person” approaches—like individual or group face-to-face sessions with a mental health professional—will never be able to meet the current need.
Telehealth therapy sessions can fill a small part of the remaining gap. Forms of nontraditional mental health care delivery must fill the rest. These alternatives do not require reinvention of the wheel; in fact, these resources are already readily accessible. Among available options: web-based courses on the science of happiness, open-source web-based tools and podcasts. There are also self-paced, web-based interventions – mindfulness-based cognitive therapy is one—which are accessible for free or at reduced rates.
Democratizing mental health
Second, mental health care must be democratized. That means abandoning the notion that the only path to treatment is through a therapist or psychiatrist who dispenses wisdom or medications. Instead, we need other kinds of collaborative and community-based partnerships.
For example, given the known benefits of social support as a buffer against mental distress, we should enhance peer-delivered or peer-supported interventions—like peer-led mental health support groups, where information is communicated between people of similar social status or with common mental health problems. Peer programs have great flexibility; after orientation and training, peer leaders are capable of helping individual clients or groups, in person, online or via the phone. Initial data shows these approaches can successfully treat severe mental illness and depression. But they are not yet widely used.
Taking a proactive approach
Third, clinical scientists must promote mental health at the population level, with initiatives that try to benefit everyone rather than focusing exclusively on those who seek treatment. Some of these promotion strategies already have clear-cut scientific support. In fact, the best-supported population interventions, such as exercise, sleep hygiene and spending time outdoors, lend themselves perfectly to the needs of the moment: stress-relieving, mental illness-blocking and cost-free.
Finally, we must track mental health on the population level, just as intensely as COVID-19 is tracked and modeled. We must collect much more mental health outcome data than we do now. This data should include evaluations from mental health professionals as well as reports from everyday citizens who share their daily experiences in real time via remote-based survey platforms.
Monitoring population-level mental health requires a team effort. Data must be collected, then analyzed; findings must be shared across disciplines—psychiatry, psychology, epidemiology, sociology and public health, to name a few. Sustained funding from key institutions, like the NIH, are essential. To those who say this is too tall an order, we ask, “What’s the alternative?” Before flattening the mental health curve, the curve must be visible.
COVID-19 has revealed the inadequacies of the old mental health order. A vaccine will not solve these problems. Changes to mental health paradigms are needed now. In fact, the revolution is overdue.
New and expecting moms are facing pandemic-related fears on top of social isolation.
After going through a harrowing bout of postpartum depression with her first child, my patient, Emily, had done everything possible to prepare for the postpartum period with her second. She stayed in treatment with me, her perinatal psychiatrist, and together we made the decision for her to continue Zoloft during her pregnancy. With the combination of medication, psychotherapy and a significant amount of planning, she was feeling confident about her delivery in April. And then, the coronavirus hit.
Emily, whose name has been changed for privacy reasons, called me in late-March because she was having trouble sleeping. She was up half the night ruminating about whether she’d be able to have her husband with her for delivery and how to manage taking care of a toddler and a newborn without help. The cloud that we staved off for so long was returning, and Emily felt powerless to stop it.
Postpartum depression and the larger group of maternal mental health conditions called perinatal mood and anxiety disorders are caused by neurobiological factors and environmental stressors. Pregnancy and the postpartum period are already vulnerable times for women due in part to the hormonal fluctuations accompanying pregnancy and delivery, as well as the sleep deprivation of the early postpartum period. Now, fears about the health of an unborn child or an infant and the consequences of preventive measures, like social distancing, have added more stress.
As a psychiatrist who specializes in taking care of pregnant and postpartum women, I’ve seen an increase in intrusive worry, obsessions, compulsions, feelings of hopelessness and insomnia in my patients during the coronavirus pandemic. And I’m not alone in my observations: Worldwide, mental health professionals are concerned. A special editorial in a Scandinavian gynecological journal called attention to the psychological distress that pregnant women and new mothers will experience in a prolonged global pandemic. A report from Zhejiang University in China detailed the case of a woman who contracted Covid-19 late in her pregnancyand developed depressive symptoms. In the United States, maternal mental health experts have also described an increase in patients with clinical anxiety.
Samantha Meltzer-Brody, M.D., M.P.H., who is the chair of the department of psychiatry at the University of North Carolina at Chapel Hill and the director of the Center for Women’s Mood Disorders, said, “The natural vulnerability of this major life transition is exacerbated when you just have sort of global anxiety, and things like going to the grocery store to pick up diapers suddenly become a much more anxiety-producing event than it ever was before.”
Dr. Meltzer-Brody explained that the higher levels of stress in perinatal women increase their risk for developing a clinical disorder, such as perinatal depression or anxiety.
In my clinical practice and in a Covid-19 maternal well-being groupI co-founded, women have voiced their fears about a number of possible distressing scenarios: delivering without a support person; being one of the 15 percent of pregnant women who is asymptomatic for Covid-19 and facing possible infant separation; and recovering during a postpartum period without the help of family or friends to provide support. There’s also grief about the loss of a hopeful time that was meant to be celebrated with loved ones.
Pregnant women and new mothers must also deal with the constant low-grade panic that comes with making decisions that have no specific medical guidelines, such as: What should I do if I have other kids at home and the only person who can help me is a grandparent who is at high risk? What kind of precautions should I take if my partner is a health care worker? Is it OK to send my kid back to day care? Without clear right answers, the mental load of these decisions defaults to mothers.
Our experience with food has changed dramatically in a matter of a few weeks (along with everything else in life) because of COVID-19. We’re cooking at home more than ever before, and grocery shopping has become one of the few essential errands we leave the house for. Armed with our long shopping list and a face mask, we head out wondering if there’s anything else we can do to protect ourselves.
One question that keeps coming up is – Should you wear gloves at the grocery store?
The short answer is no. You do not need any kind of gloves at the grocery store.
Gloves will not protect you. If you touch a contaminated surface, the virus can transfer to your glove just like it could transfer to your fingers, so there’s no added protection from the gloves. If you touch your mouth or nose with the glove, you can pass the virus to yourself. And taking the gloves off after shopping is an especially vulnerable moment, as you can easily transfer any germs on the gloves to your hands and face if you’re not careful.
The reality is you’re much more likely to catch the coronavirus from the respiratory droplets of a person talking or sneezing near you rather than from an item you touch at the store – that’s why physical distancing is so important. To protect yourself at the grocery store, wear a cloth face mask and keep a minimum 6-foot distance from others. Plan your grocery trip so you can get in an out quickly during quiet times to minimize contact with others.
Gloves do not replace hand hygiene. Given that gloves don’t protect you from the virus, wearing gloves doesn’t save you time from hand washing. You still have to keep up with hand hygiene. That’s the most important way to remove the virus from your hands.
To protect yourself, you’ll want to use hand sanitizer as you enter and exit the grocery store and wipe down your shopping cart handle with a disinfectant. When you get home, wash your hands well with soap and water for 20 seconds. And clean any other items that might be dirty, like your phone and reusable grocery bags.
Gloves do not protect others. As you move about the grocery store, the gloves can get dirty from whatever you touch and transfer it along to others – just as your fingers would.
To protect others, touch as little as possible while you’re out. Don’t pick up produce and then put it back down.
Save the medical gloves. Medical gloves are meant for protection when you’re in high risk situations, like if you’re exposed to bodily fluids like blood, mucous, vomit and urine. The gloves protect patients, caregivers, and health care workers all day long from tasks at home like washing the laundry of a person sick with COVID-19, to tests and procedures at the hospital. For grocery shopping, the gloves don’t add benefit and aren’t necessary. Given medical gloves are in short supply, just as medical face masks are, please use gloves wisely.
You’ll have to click Watch on YouTube to see the video.
Welcome back to Weekend Music Share; the place where everyone can share their favourite music.
Feel free to use the ‘Weekend Music Share‘ banner in your post, and don’t forget to use the hashtag #WeekendMusicShare on social media so other participants can find your post.
When you’re anxious, one of the best things you can do is slow down and focus on your breath. But what can you do when you’re so anxious or worried that this doesn’t work or simply feels impossible to do?
Below, I’ll share a simple but effective trick that brings in more of your senses and helps cut through the anxiety so you can access more calm and focus.
But first, a quick look at the science behind worry and anxiety.
There’s a part of your prefrontal cortex — the thinking and planning part of your brain — that is called the dorsolateral prefrontal cortex, or dlPFC for short. It is toward the front and side of your brain. The dlPFC has been shown to be important for working memory; basically, it holds information for you to use right now. You rely on it when someone tells you a phone number and you repeat it to yourself as you prepare to dial, or when you take mental note of the items you need to pick up at the grocery store in the next few minutes.
If you’re really worried about something, that worry thinking takes up space in your working memory. You can compare your dlPFC to the RAM of your computer. If your computer has a lot of RAM, you can run a bunch of programs at the same time. If it doesn’t have that much, it gets slower as you use up the space, signaled by the spinning wheel of “Hey, you are overtaxing me right now.” Eventually, it crashes if you keep pushing.
So how can you free up that space and get your brain working more effectively?
Mindfulness practices can get your thinking brain back online, but doing them can sometimes be really challenging. You might try to bring your awareness to your breath or your feet, but if your working memory is filled with worry thoughts, this effort can feel forced or just not enough to help your mind and body calm down.
So here’s a little exercise to use to reboot that RAM in your brain: It’s called five finger breathing.
Step 1: Place the index finger of one hand on the outside of the pinky finger on your other hand. As you breathe in, trace up to the tip of your pinky, and as you breathe out, trace down the inside of your pinky.
Step 2: On your next inhale, trace up the outside of your ring finger, and on the exhale, trace down the inside of your ring finger.
Step 3: Inhale and trace up the outside of your middle finger; exhale and trace down the inside of your middle finger.
Step 4: Continue finger by finger until you’ve traced your entire hand.
Step 5: Reverse the process and trace from your thumb back to your pinky.
Five finger breathing is great, because it brings several of your senses together at the same time. You’re watching and feeling your fingers while you’re paying attention to your breath. This not only requires awareness of multiple senses (seeing and feeling) but an awareness of multiple locations in your body (your two fingers, your two hands and your lungs).
When you’re able to use up your RAM with multi-sensory and multi-location awareness, you can forget what you’re worrying about, even if it’s for a few moments. As you do this, you’re also calming your physiology down, so if those thoughts come back, they won’t be as convincing because they won’t have the same emotional tone. Without that arousal, they have less weight behind them and they’re easier to let go of or not react to.
If you have children in your life, I encourage you to teach them five finger breathing. Then, practice together. You can do this before each meal, before nap time, before bed or during other transition points within the day.
If you notice that you’re starting to get worked up during the day, take a moment to express how you’re feeling. You could say, “Oh, I’m a little stressed right now.” Then enlist your kids’ help, which will empower them, and ask them: “Can you help me calm down by leading me in a five finger breathing?”
If you don’t have kids or live alone, no worries. Just let your inner child help and guide you.
Judson Brewer MD, PhD Judson Brewer is the Director of Research and Innovation at the Mindfulness Center and associate professor in psychiatry at the School of Medicine at Brown University, as well as a research affiliate at MIT. As an addiction psychiatrist and expert in mindfulness training for treating addictions, he has developed and tested novel programs for habit change, including both in-person and app-based treatments for smoking, emotional eating and anxiety. Based on the success of these programs in the lab, he cofounded MindSciences, Inc. to create app-based versions of these programs for a wider audience. He is also the author of the book The Craving Mind.
If so, you’re not alone. In fact, if the cosmetics industry is anything to go by, everyone is in the same boat. We all want to avoid the specter of old-age and frailty.
Aging, though, doesn’t have to be negative. For one, it is a sign of success. If your skin is wrinkled and your hair grey, it shows you’re a survivor – you made it through.
Growing old also provides you with decades of insight you don’t get when you’re younger. It takes time to understand how the whole show works.
There’s a tendency to see aging as something negative – and in many ways, it is. But there are also positive aspects to it we shouldn’t overlook.
At the start of life, you spend the vast majority of your time working like a maniac, trying to accumulate the resources you need to have a decent quality of life. The problem, though, with working fifty hours a week, is that it takes you away from the things that matter – your friends and family.
Getting older, however, helps to reverse this process. When you retire, you suddenly have more time to do all the things you never could in your working life. And that means you can invest more time in your relationships – the most motivating aspect of existence for many people.
Learning how to navigate the social environment is a massive challenge. Other people are complicated, and so are you. So it takes time to learn the game.
Once you have several decades under your belt, though, you can gain worldly wisdom. Eventually, you see how the landscape works and are able to run with it confidently. You’re much better able to deal with difficult situations and know precisely what the other person needs to hear. Over time, you become known in your local community for your sensitive, empathic abilities.
Achieving A Sense Of Accomplishment
Feeling a sense that you’ve accomplished something in your life is difficult when aged twenty. When you hit sixty, though, you’ve had way more time to get done what you needed to do.
Achieving a sense of accomplishment is something you only get once you pass a certain age. You can watch your children grow up and take on the world, just like you did when you were young. And you can see the effects of your work in the world all over the place.
You Get Discounts
Despite the fact that you probably have a large pension pot in the bank, you get various privileged discounts when you become a senior. There are discounts all over the place, from medicine to dining to entertainment and transportation.
All these perks are a way for society to express its collective admiration for people who’ve committed their lives to the good of the people around them. Well – that’s the hope, at least.
You Have More Time For Civics And Volunteering
When you get older, you no longer have to pursue a career if you don’t want to. Instead, you can change how you use your time, focusing more on civics and volunteering.
Many in-home senior care providers actively make this a part of their service offering. Being able to dedicate your time to people in need gives your life a strong sense of purpose and fill the days, which can sometimes seem a little empty.
You Have A Happier Outlook
Over the decades, research has shown that happiness peaks at age twenty and then declines in our thirties and forties, before bouncing back later in life. If you are old, therefore, you are much more likely to feel happy too.
Why this happens isn’t entirely clear. You would have thought that the younger generation would be the most content since they have their health and vigor. But psychologists believe the reason has to do with an improved ability to deal with hardship. Over the course of their lives, older people develop the skills they need to thrive emotionally, even in situations of adversity. People in their thirties and forties facing issues like unemployment and divorce don’t have the benefit of hindsight. They must go through these things first.
The perks of getting older, therefore, do exist. Often, it is a question of being grateful for what we have, not angry about things we don’t.
A blog by Rachel Bustin that you might be interested in.
I’m reposting for the very important month of Alzheimer’s Awareness. Although I don’t have Alzheimer’s, I do have dementia caused from Lyme Diseases. Every day my memory slips a little, some days I don’t notice, this week has been a difficult week. I know from experience with my granny’s dementia stress can play a role in how your day is going. Even as she progressed in her diseases I could tell the stress we felt impacted her in some way.
If I can say anything it’s never argue, there is no winning. Change the subject and that often works. I would sometimes have problems with her not wanting to take her medication and become very angry. I let it go and a little while later came back and said time to take your medication. Most of the time it worked.
Remember once your loved one no longer knows who you are it’s not personal, it hurts like hell but it’s not personal. One of the activities I did at the end of granny’s life was show her photos of her parents. I would hear her call out for her mother sometimes and I hoped the photos would give her some peace.
Above all else, there is no right or wrong way to take care of someone with Alzheimer’s or dementia. There are many things you can do to make their life easier and safer but you can only do your best. As hard as the decision may be, there are times when an Alzheimer’s rated facility is required. It is very difficult to care for someone at home. It’s a full-time job in addition to health care assistance.
Licensed professional counselor (LPC) Ruth Drew oversees the Alzheimer’s Association’s 24-hour helpline, which offers support to those facing the challenges of dementia and Alzheimer’s disease, including families and caregivers. The fact that the helpline receives more than 300,000 calls each year hints at the heart-wrenching issues that accompany a dementia diagnosis, not just for the individual but for the person’s entire support system.
“We receive a wide range of questions, from someone worried about the warning signs of cognitive decline or dealing with a new diagnosis, to an adult son whose mother didn’t recognize him for the first time, or a wife wondering how to get her husband with Alzheimer’s to take a bath. Whatever the reason for the call, we meet callers where they are and endeavor to provide the information, resources and emotional support they need,” says Drew, director of information and support services at the Chicago-based nonprofit.
Professional counselors are a good fit to help not only individuals with dementia and Alzheimer’s, but also those in their care networks, Drew says. Whether counseling individuals, couples or even children, the far-reaching implications of dementia mean that practitioners of any specialization may hear clients talk about the stressors and overwhelming emotions that can accompany the diagnosis.
“People diagnosed with Alzheimer’s and other dementia diseases are going through profound life changes — coping with the realities of an incurable disease that is stealing their abilities and their memories. Counseling offers a place to process the losses, develop ways to cope, and find meaning in their current situation,” Drew says. “Similarly, family members face emotional, physical and financial challenges when they care for someone with Alzheimer’s. It helps to have a safe place to process feelings, get support, learn to cope with present realities, and plan for the future.”
A growing need
“Dementia isn’t a normal part of aging. It just happens that most dementia patients are older,” says Jenny Heuer, an LPC and certified dementia practitioner in Georgia who specializes in gerontology. “There is this stigma that just because you’re getting older, you’re going to get dementia.”
The Alzheimer’s Association (alz.org) defines dementia as “an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities.”
Although many people associate dementia with Alzheimer’s, there are numerous forms of dementia, and not all are progressive. Dementia can be reversible or irreversible, depending on the type, explains Heuer, the primary therapist in the geriatric unit at Chatuge Regional Hospital in Hiawassee, Georgia. Alzheimer’s, an irreversible, progressive form of dementia, is most common, followed by vascular dementia, which can occur after a stroke. Forms of dementia can also co-occur with Down syndrome, Parkinson’s disease, Huntington’s disease and other diagnoses. Research has also linked moderate to severe traumatic brain injury to a higher risk of developing dementia or Alzheimer’s disease years later.
Heuer, a member of the American Counseling Association, recalls a client she counseled who was diagnosed with Alzheimer’s prior to age 62. She had lived with a husband who was violent and physically abusive toward her, and the client’s caregivers wondered if she had suffered a brain injury that contributed to her early onset Alzheimer’s.
Heuer notes that other conditions can lead to an assumption or misdiagnosis of dementia. For example, a urinary tract infection (UTI), if left untreated, can progress far enough to cause confusion in a client. Once the UTI is diagnosed and treated, the confusion can dissipate. In addition, excessive alcohol use, depression, medication side effects, thyroid problems, and vitamin deficiencies can cause memory loss and confusion that could be mistaken for dementia, according to the Alzheimer’s Association.
“There’s so many [other] things to rule out,” Heuer says. “Doctors try to rule out every other health issue before they diagnose dementia.”
The complicated nature of dementia only reinforces the need for counselors to do thorough intake evaluations and to get to know clients holistically, Heuer says. Counselors should ask clients about anything that has affected or could be affecting their brain or memory, including medication use, stress levels, past physical trauma or brain injury, depression, sleep patterns, exercise and other factors.
The World Health Organization (WHO) reports that roughly 50 million people worldwide currently have dementia, and nearly 10 million new cases develop each year. Alzheimer’s disease-related dementia may contribute anywhere from 60% to 70% of that overall number, according to WHO.
Alzheimer’s is the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention. The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. A recent report from the nonprofit estimated that 5.7 million Americans of all ages were living with Alzheimer’s-related dementia in 2018, the vast majority of whom (5.5 million) were 65 and older. Close to two-thirds of Americans with Alzheimer’s disease are women, according to the association.
These numbers are only expected to increase as the U.S. population ages and the baby-boom generation reaches retirement and later life, Heuer notes.
The U.S. Census Bureau projects that in the year 2034, the number of Americans 65 and older will, for the first time in history, eclipse the nation’s number of youths under age 18. By 2060, close to one-quarter of Americans will be 65 or older, and the number of people older than 85 will have tripled.
“Aging issues hit home for counselors across the board,” Heuer says, “because we are all aging, and many are caring for aging parents. … I invite other counselors to join me in working with this population. [Alzheimer’s] is the sixth-leading cause of death. That sounds very morbid, but it’s only going to go higher. More and more people will be diagnosed. With the aging baby-boom population, there’s someone around every corner [who is] going to be impacted by this disease.”
Caring for the caregivers
There is an obvious emotional component to caring for a loved one affected by memory loss and the other aspects of dementia, but there is also the burden of assuming management of the person’s practical tasks, such as financial planning and keeping up with medical appointments. The stress of it all can affect the person’s entire network, says Phillip Rumrill, a certified rehabilitation counselor in Ohio whose professional area of expertise is clients with disability, including dementia.
“Dementia affects the whole family system, and possibly for generations. The person [with dementia] needs help, yes, but [so do] their spouse, children and entire family system. That’s critically important [for counselors to be aware of] when you’re dealing with dementia,” says Rumrill, a member of the American Rehabilitation Counseling Association, a division of ACA. “There is a tremendous amount of burnout that comes with being a dementia caregiver.”
Witnessing a loved one’s memory and abilities decline can cause caregivers to feel sad, frustrated, exhausted, overwhelmed, hurt, afraid and even angry, says Matt Gildehaus, an LPC who owns Life Delta Counseling, a private practice in Washington, Missouri.
“The caregivers and loved ones are often the hidden victims of dementia. They can become completely overwhelmed as the role becomes all-encompassing,” says Gildehaus, who counsels adults facing a range of challenges, including aging-related issues and dementia. “Taking care of someone can easily become an identity that gets affirmed and reinforced until it comes at nearly the complete expense of self-care. When being the caregiver for someone with dementia overtakes their life, the caregiver’s emotional and physical health frequently begin to decline.”
Each of the counselors interviewed for this article asserted that clinicians should, first and foremost, emphasize the importance of self-care with clients who are caregivers to individuals with dementia. Counselor clinicians can ask these clients what they are doing for self-care, help them establish a self-care plan if needed, and connect them with local resources such as support groups and eldercare organizations.
It is also important to encourage clients to ask for help from others when they are becoming overwhelmed, says Rumrill, a professor and coordinator of the rehabilitation counseling program at Kent State University in Ohio, as well as founding director of its Center for Disability Studies. If clients mention having a loved one with dementia, counselors should listen carefully to make sure these clients are taking care of themselves and processing their feelings related to the experience.
Connecting clients to support groups and other resources can be vital because many families feel lost and isolated after their loved one receives a dementia or Alzheimer’s diagnosis, Drew notes. “This isolation can increase throughout the journey as caregiving demands intensify, especially if they don’t know where to turn for help,” she says.
Families may also experience emotions that parallel the grieving process as they witness the progressive loss of the person they knew. Caregivers might even find themselves with hard feelings emerging toward their loved one, particularly as they try to handle the frustrating behavior challenges that Alzheimer’s and dementia can introduce.
“The disease can be very deceiving because one day the person may be very clear, and another day they’ll be confused. Caregivers can feel [the person is] doing things on purpose, just to push their buttons,” Heuer says. “I often ask if the person was aggressive or called [the client] names before they were diagnosed. Most often, the answer is no. Then I explain that it’s the disease, not the individual” prompting the behavior.
Gildehaus, a member of ACA, has seen similar frustrations among clients in his caseload. “I often help caregiver clients by providing a safe place for them to share the things they don’t feel they can share with family and friends,” he says. “For caregivers, there are three tools I focus on using: therapeutic silence, empathic listening, and normalizing what they often describe as ‘terrible thoughts.’ These … can be ideas like, ‘They make me so angry,’ ‘I dread going to the nursing home some days’ or even ‘Sometimes I secretly hope they don’t live for years like this.’”
Rumrill notes that clients caring for a loved one with dementia may need a counselor’s help to process how the disease has disrupted roles within the family. He experienced this personally when caring for his grandmother, who lived with dementia for years before passing away in 2009 of stomach and liver cancers. Rumrill, who held power of attorney for his grandmother’s financial affairs, had to adjust to taking care of someone who had taken care of him throughout his life. It felt like a role conflict to have to begin making decisions on his grandmother’s behalf while still trying to respect her wishes, he recalls.
“It’s changing roles: They used to take care of you, and now you take care of them,” Rumrill says. “There is an odd juxtaposition when a child is telling a parent what to do. It can be hard [for the older adult] to accept when it’s coming from the younger generation. The roles have switched, and no one got the memo.”
Counseling sessions for couples and families can also serve as safe spaces to talk through the stressors and disagreements that come with caregiving, Rumrill and Heuer note. Counselors can serve as neutral moderators to facilitate conversations about tough subjects that clients may be fearful of or avoiding outside of sessions. This can include talking over logistical or financial issues, such as dividing caregiving tasks or assigning power of attorney, and harder conversations such as when and how to move a loved one to a care facility.
Counselors who work with couples should be aware of the intense stress that providing care for someone with dementia can put on relationships, Rumrill adds. Home life can be turned upside down when one member of a couple’s time and attention are devoted to caregiving. This is especially true if the family member with dementia moves into the home. Tasks that used to flow easily, such as unloading the dishwasher or taking the kids to sports practices, can become points of contention. Challenges that the couple successfully navigated before — from budgeting to parenting issues — can become more pronounced and complicated as caregiving puts extra strain on the couple’s time, emotions and finances, Rumrill says.
It’s an unfortunate reality, but counselors working with clients who have dementia or their families also need to be watchful for signs of elder abuse, including financial abuse, Rumrill says. Dementia patients and their caregivers are also at higher risk for issues such as depression, anxiety, suicidal ideation, and substance use and abuse (which may be used as a coping mechanism).
Listen and validate
Clients who have dementia can get a variety of needs addressed in counseling sessions — needs that will change as the dementia progresses.
In the early stages of dementia, counselors can help clients process their feelings and fears about the diagnosis, as well as work toward accepting and adapting to the changes that are coming. In the middle to latter stages, clients may benefit more from reassurance and validation from a counselor, as well as occasional redirection and calming techniques.
Heuer recalls a client whose husband had recently been placed in a memory care facility because of Alzheimer’s disease. The client — whom Heuer calls “Anne” for the purposes of this example — was dealing with pre-existing depression, which was the initial focus of the counseling sessions. Heuer and Anne also discussed Anne’s relationships with family members and the various changes she was facing, which included moving because of her husband’s placement in the memory care facility.
According to Heuer, Anne harbored a great fear of losing her own memory, and over time, her memory did in fact begin to deteriorate. She would acknowledge the decline in counseling sessions as she and Heuer talked about its impact on Anne’s life. Later, as Anne’s dementia progressed, Heuer shifted her work to focus more on fostering Anne’s feelings of safety and connection. “The interesting part of working with Anne is she never mentioned the word dementia. I heard about her diagnosis from family and caregivers,” Heuer recalls.
“As her memory declined, I would reflect her feelings [in counseling],” Heuer says. “Then there were sessions where Anne would spend the majority of the time talking about how she had been traveling on a train and had just gotten off the train. Frequently, she would share the story as if it was the first time she was telling it to me.” Heuer says one of the best suggestions she has been given for working with clients with dementia is to show them the same level of patience and attention regardless of whether they are telling her a story or sharing a memory with her for the first time or the 10th time.
“Anne also had hallucinations [in the latter stages of dementia],” Heuer says. “She had moments of clarity where she knew they were hallucinations and questioned her own sanity. I had no magical cure or answer. I would try and imagine how I would feel if this were happening to me and [then] tapped into empathy and the core foundation of person-centered therapy.”
Most of all, individuals with dementia need a counselor to simply “be present and listen,” adds John Michalka, an LPC with a solo private practice in Chesterfield, Missouri. He specializes in working with clients who have mood disorders related to chronic illness, including dementia.
“Patients living with dementia often tell me they just need their loved ones to stop nagging them and making them feel like the things they are doing are intentional,” says Michalka, an ACA member who has personal experience caring for a loved one with dementia. “The patient isn’t forgetting on purpose. The patient has enough to deal with without being made to feel like a burden as well. It always amazes me how simple and unselfish the patient’s request is when it comes to what they need: just simple love, understanding and patience.”
The following insights may be helpful for counselors who treat clients with dementia. Some of the guidance may also be relevant to share with clients who are family members of or caregivers to a person with dementia.
>>Correcting versus agreeing: Patients in the memory care unit where Heuer works sometimes come up to her and say, “It’s so good to see you again!” even though they have never met her before. Over time, she has learned to read clients and think on her feet to respond appropriately to remarks that aren’t based in reality.
For caregivers, deciding whether to correct a person with dementia or go along with what the person is saying can become a daily or even moment-to-moment struggle. Heuer says her decision to validate or correct is often based on how likely the person is to become agitated or aggressive. But empathy also comes into play. “I try to put myself in their shoes. How would I feel if I were seeing a friend I hadn’t seen in a while? It really comes down to meeting them in their emotions.”
Some clinicians may call the practice of validating or going along with a client with dementia “therapeutic lying,” Heuer says, but “I call it ‘molding the information’ and doing what it takes for them to feel calm and safe. …We have to adapt to them because they are not able to adapt to us. It is as if they have a different inner world, and we have to meet them in their world.”
Michalka says he also finds validation therapy helpful for easing anxiety in clients. With clients who are dementia caregivers, he often emphasizes that what is going on in the mind of the person with dementia is their reality.
He recalls one client who was beginning to panic because they saw someone in their room. “There was no one in the room, but the patient’s experience or perception of a stranger in their room was real,” Michalka says. “A natural reaction for most caregivers would be to correct the patient. In doing so, we are challenging the patient’s perception of reality. This typically will only escalate the patient’s anxiety and, in doing so, escalate the loved one’s or caregiver’s anxiety.
“Imagine if you saw a stranger in your room, and when you [try] to tell someone, they proceed to tell you, ‘No, there [isn’t].’ Would you not become more and more agitated as you try to convince them [and] they continue to challenge your reality? Instead, we should validate their experience by asking if that stranger is still in the room. Then, one would empathize with the patient by validating how scary that must have been, but now the stranger is no longer there and they are safe. After which, the patient’s attention should be redirected to a more pleasant thought or situation.”
>>Considering the whole person: Working with clients with dementia “takes you out of your comfort level because you have to become very creative in how you interact with [them]. It’s not the type of counseling that you learn in a textbook,” Heuer says. “Your ability to counsel and work with these individuals goes well beyond the knowledge you gain about counseling in your master’s [program].”
Heuer encourages clinicians to learn more about who clients were before their dementia diagnosis — what they did for a career, what their hobbies were, their likes and dislikes. Counselors can ask clients directly for this personal information or seek details from their family members. Learning these personal details can help to better inform counselors’ interventions and help form stronger connections with clients, Heuer says. “Tapping into what made them happy as a human being [without dementia] may be therapeutic for them,” she adds.
For example, a client who loves baseball may be comforted and more responsive while watching a televised ballgame or flipping through an album of baseball cards with a counselor. A client who was a teacher or a banker might find comfort writing in a ledger. Even clients with late-stage dementia can respond when their favorite music is played, Heuer notes.
She recalls one client who had previously worked in business and would sometimes think that his caregiver was his secretary. When this happened, the caregiver would “take notes” for him by writing on paper. “It doesn’t have to make sense, but to them it may make sense,” says Heuer, whose doctoral dissertation was on the lived experiences of individuals with early stage Alzheimer’s disease.
>> Redirecting: When working with clients in the middle to latter stages of dementia, techniques that prompt a change of focus are invaluable. Redirection can keep these clients from becoming upset or escalating to aggression, Heuer says. For caregivers, this technique might involve engaging the person in an activity that they used to enjoy or simply asking for help with a task, such as folding laundry or setting the table.
“Redirection really comes into play when an individual is exhibiting behaviors such as agitation, fear, anger or paranoia,” Heuer explains. “Normally, there is something in their environment that is triggering them. An example we often observe and hear about is an individual [who] is wanting to go home. In essence, they want to feel safe and are looking for something familiar. Redirection is a technique that refocuses the individual’s attention in an effort to therapeutically calm them and make them feel safe.”
Heuer mentions a woman who was wandering in the care facility where Heuer works and feeling a strong urge to leave. The woman was getting agitated and escalating to the point that staff members were going to medicate her. Heuer stepped in and asked the woman if she wanted to take a walk. The woman agreed and soon calmed down as she and Heuer walked together and chatted.
With dementia, behaviors often manifest out of the person’s worry about their own safety or the safety of loved ones, Heuer notes.
“We all have that need to have a sense of purpose. Just because someone has dementia, they’re not less human. They have similar needs but have a different way of communicating them. Usually, there is a need behind every single behavior they’re displaying,” Heuer says.
>> Working through grief: Individuals with dementia and their loved ones often experience a range of grief-related emotions, from denial and avoidance to sadness. Counselors may find it helpful to use grief and loss techniques with these clients, Rumrill says.
Watching a loved one with dementia decline and seemingly change into a different person can feel similar to experiencing that person’s death or loss, Rumrill says. In the case of his grandmother, even her vocabulary and the way she spoke changed. She began using profanity and other words that Rumrill wasn’t previously aware she even knew. When she became angry, Rumrill says she would “go off” on people, which she never did prior to her dementia diagnosis.
“There’s a tremendous sense of loss that can go with that. The person you knew and loved isn’t there [any longer],” he says. “I was grieving the loss of who [his grandmother] was and also grieving with her over her loss of independence.”
Feelings of loss can also resurface for clients with dementia who are widows or widowers, even if they have previously processed their partner’s death. Dementia can reaggravate the person’s feelings of grief and sadness or even ignite feelings of anger toward a deceased partner for leaving them to go through their dementia journey alone, Rumrill says.
Family members and caregivers may experience repeated cycles of grief as their loved one’s dementia or Alzheimer’s progresses, Michalka adds. “Each time the loved one living with dementia progresses to the next stage, the client [a caregiver or family member] in some ways repeats the grieving process. They now are experiencing another loss. It is as if they have lost their loved one once again,” Michalka says. “It is extremely difficult for many clients to have mom or dad not know who they are or simply not remember their name. The client loses their loved one many times during the progression of dementia. At a minimum, the client loses the person their loved one once was, and then once again upon the passing of the loved one.”
>> Focusing on strengths: Clients with dementia are likely to be saddened by the anticipated or actual loss of their abilities. A counselor can help these clients flip their perspective to focus on what the person can still do, Heuer says. She often uses the words strengths and challenges, not weaknesses, during conversations about what the client is still able to do and enjoy.
For example, a client with dementia may no longer be able to maintain a garden outdoors, but gardening supplies and planter pots can be brought to the person inside so they can still get their hands in the soil. “Activities can change as the disease progresses,” Heuer notes.
>> Using “tell me about” prompts: Gildehaus says that narrative therapy can be a helpful technique with clients who have dementia. These clients often respond well to storytelling prompts, even as their memories fade. It can be therapeutic for clients with dementia to share memories and, in turn, to feel heard and understood, he explains.
Similarly, Heuer uses reminiscence therapy with clients with memory loss, asking individuals to talk about their careers, families, and other favorite memories. It is not helpful, however, to frame questions by asking clients whether they remember something, she stresses. Instead, counselors can use gentler “tell me about” prompts to spur clients to open up. For example, instead of asking, “Do you remember your parents?” a counselor would say, “Tell me about your parents,” Heuer explains.
Rumrill notes that group work can be very helpful for caregivers or family members of people with dementia, especially to prevent or ease burnout. Motivational interviewing, cognitive behavioral techniques, and rational emotive techniques can also help clients process the changes and stresses that come with having a loved one with dementia. But Rumrill urges counselors to use whatever techniques they find to be most helpful to and best suited for the client.
Dementia is “no more stressful than any other life issue that brings people to counseling; it’s just different,” Rumrill says. “It has unique features that need to be understood to help. Marshal all the coping reserves you can to help the client.”
>> Offering empathic listening: Gildehaus notes that professional counselors’ core skills of listening, empathic reflection and normalization can go a long way for clients dealing with dementia.
“In my experience, clients struggling with dementia need someone to listen to them for understanding without confronting them, trying to argue with them, or trying to fix them,” Gildehaus says. “Normalizing frustrations and fears related to memory challenges and aging also helps clients feel less defective.”
When working with clients who have dementia, Gildehaus says his primary objective is to offer a nonjudgmental environment in which these individuals can share their frustrations and fears. “My efforts are focused on providing an interaction where they feel heard and understood without feeling questioned or having someone trying to talk them out of their ideas,” he says.
This came into play this past summer as Gildehaus faced a tough conversation with a client who needed to give up her right to drive because of cognitive decline. “This was very hard for her,” he recalls. “She argued that she did not drive far, that she had not had any accidents, and that she didn’t care if she died in an accident. She became very emotional — tearful and angry. I listened empathically, validated her truths, and reflected her logic and feelings. Then, I asked if she wanted her lasting legacy to be causing someone else’s injury or death. She agreed this was not what she wanted. We then explored options and resources that would allow her to maintain her freedom and active schedule without driving. We talked about local taxi services, friends who were going to the same activities [and could give her a ride], and the obvious solution became allowing her home health care provider to drive her most of the time.”
Still human
Individuals with a dementia diagnosis often feel as if they’ve been labeled as damaged goods, “deemed incompetent and unable to do anything for themselves,” Heuer says. The empathy and support that professional counselors are capable of offering these clients can go a long way toward changing that mindset, she asserts.
People with dementia “are still capable, still human, and they have emotions,” Heuer emphasizes. “There is an immediate stigma attached to someone [with a dementia diagnosis] that they aren’t able to do anything for themselves, and that’s often a source of frustration. There is an assumption that they’re helpless. But they will say, ‘I need help.” … They will let you know. What they need from counselors — and everyone else — is the recognition that they are still a person and still human.”
****
Counselors as caregivers
Despite a career as a helping professional, Phillip Rumrill found himself feeling “inadequate” when it came to caring for his grandmother as her dementia progressed. He admits that he learned how to manage “through trial and error.”
The professional objectivity that allows practitioners to help others process issues in counseling simply isn’t there when it comes to caring for their own loved ones, says Rumrill, a certified rehabilitation counselor and a professor and coordinator of the rehabilitation counseling program at Kent State University.
“All of this stuff that you know about professionally goes out the window when you experience it personally,” Rumrill says. “You may have helped a client who is dealing with this, but it’s not the same when you’re going through it yourself. … You may think that because you have expertise in helping others you might know procedurally what to do, but it’s just different when it’s affecting you on a core level. You can arm yourself with information, but it’s going to be very different to be going through it on your own.”
Although it may not come easily, counselors who have loved ones with dementia should heed the same guidance they would give to clients in the same situation, including keeping up with their self-care and asking for help when needed.
After his grandmother passed away in 2009, Rumrill collaborated with two colleagues, Kimberly Wickert and Danielle Dresden, who also had cared for loved ones with dementia, to write the book The Sandwich Generation’s Guide to Elder Care. Their hope was that their insights might help other practitioners who were facing similar challenges. “You can’t be [your] family’s counselor,” Rumrill says. “Sometimes you have to shut off your professional side and deal with the humanity of your own experience.”
John Michalka, a licensed professional counselor and private practitioner, says he and his wife experienced a range of issues — from stress to anxiety to grief — while caring for his mother-in-law. Michalka’s mother-in-law, who had vascular dementia, moved in with Michalka and his wife in 2013 when she was no longer able to care for herself.
“I took a hiatus from work, and for the last two years of her life, I cared for her until she passed [in January 2015],” he says. “I watched my wife, as a daughter, struggle with pain and grieving during every step down of the disease, from [her mother] forgetting our names to [us] becoming absolute strangers. For me, I was the caregiver and did my best to suppress the emotion. To say the least, caring for anyone living with dementia can be extremely difficult. At least it was for me.”
****
The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 helpline at 800-272-3900 or visit alz.org(click the “Help & Support” tab for links to online and local support groups).
Also, the U.S. Administration on Aging offers an eldercare services search tool at eldercare.acl.gov. Resources are also available from the Dementia Action Alliance (daanow.org) and the Family Caregiver Alliance (caregiver.org).
****
Contact the counselors interviewed for this article:
Invisible diseases are among the most challenging conditions to live with because you not only struggle with pain and symptoms, but also judgment and misunderstanding from those you love the most. Cluster headache patients face this stigma for many reasons: We tend to isolate ourselves during attacks and episodic cycles, and talking about it can bring on post-traumatic stress disorder (PTSD)-like symptoms. “Clusterheads” live in fear of the next attack. While there are countless things we wish our friends, family, and medical professionals would understand, if the public knew the following things, our disease would be taken more seriously.
1Cluster headaches are different from migraine.
“It’s not a migraine,” says Deborah Marcus. “Dark rooms, quiet, [and] resting do not help. Pacing around or finding ‘positive distractions’ are what can get me through episodes.” Cluster headache is one of the trigeminal autonomic cephalalgias, and a primary headache disorder completely separate from migraine disease. The typical treatments and behaviors for cluster headaches are vastly different. The pain is searing and stabbing around the eye and temple, causing restlessness and agitation. We hit ourselves on the head with our hands or blunt objects, moan and scream, and dream of removing our eyeball.
The attacks are strictly one-sided, lasting 15 minutes to three hours, and occur several times a day. No one—no one—has just one cluster headache attack, so comments such as “Oh, I’ve had one of those,” come off as hurtful.
2You can recognize “suicide headaches” without diminishing other disorders.
“It’s not invalidating migraine or any other pain condition to acknowledge this condition is very severe, [with] high suicide rates, and debilitating,” says Heidi Marie. “The majority of people know what migraine [disease] and tension-type are, but not cluster.”
Many patients have faced disbelief and been told they’re exaggerating during an attack. They’re not only dismissed by their loved ones, but also by the medical community. Cluster headaches are nicknamed “suicide headaches” because they make otherwise healthy people seriously contemplate ending their lives.
“I’ve had one vaginal birth and three C-sections. Combine all of the pain you experience through all of those together, and you still don’t come close to an inkling of the pain that is caused by one cluster attack,” says Amanda Dapson.
3Psychedelics can be an amazingly effective treatment.
“The medicinal use of LSD has changed my life living with clusters. I’ve been so amazed with how well this treatment has worked for me… real and lengthy results,” says Becki Neuenschwander.
Psilocybin mushrooms and lysergic acid diethylamide (LSD) have been studied for their efficacy in treating both episodic and chronic cluster headaches. A 2006 study at Harvard University found that both psychedelic substances could abort attacks and that even more patients found that it could end their episodic cycle. Psilocybin and LSD users in the study reported reduced severity and longer remission periods. These substances even worked in patients who didn’t respond to traditional treatments.
4We struggle to get more than 1-2 hours of sleep.
“Lack of sleep is a real thing. I can’t get more than two hours at a time while in a cycle,” says Ben Merrick, adding, “which makes attacks worse, which makes it hard to sleep, which makes attacks worse… ”
Cluster headaches typically come with nocturnal attacks that wake you from rapid eye movement (REM) or “dream” sleep. It’s difficult for clusterheads to get more than 90-120 minutes of sleep at a time. That’s bad enough for one night, but imagine going weeks and months surviving on so little sleep.
5Oxygen treatment is most effective but hardest to get.
High-flow oxygen is the best and safest option to abort cluster headaches, but this treatment is the one that patients struggle the most to obtain. Whether the delay is caused by doctors who have misguided notions of “oxygen toxicity,” or insurance companies and oxygen suppliers who don’t understand its necessity, patients can spend years trying to get access to oxygen.
Many insurance suppliers won’t cover the cost because the Centers for Medicare and Medicaid Services refuse to list 100 percent oxygen as first-line treatment. Then, when patients do get the tanks, they must fight for the proper regulator, buy their own non-rebreather mask, and learn a specific breathing technique.
6We live in fear of the next attack.
“My attacks happen roughly around the same time, so when I’m in the bedroom crying and not at the table, I don’t want to hear whispers… Trust me, I’d rather be eating meatballs and pasta with you,” says Sally Nee-Brady.
Some clusterheads can set their watch by their attacks, as cluster headaches occur at the same times each day for weeks, months, or years on end. We live in fear of 10 am or 2 pm because we know “the beast” is coming for us again. PTSD, depression, and agoraphobia can quickly take over your life as you watch the clock tick.
“The anxiety of knowing that you are about to have an attack, and there is little to nothing you can do to stop it, is overwhelming,” Merrick says.
7Cluster headaches are as common as Parkinson’s disease.
Much of the research on cluster headaches has been funded or instigated by the patient community through Clusterbusters. Despite the documented severity and high suicide rate, there’s a severe, ongoing lack of funding and research.
“This is not a rare disease,” says Eileen Brewer, President of Clusterbusters. “It’s as prevalent as Parkinson’s disease. Cluster headache should not be riding on the coattails of any other diseases. It is a serious, debilitating, and deadly disease that deserves much-needed attention.” •
Ashley Hattle is a medical and fiction writer who has experienced episodic cluster headaches since 2007. She is the award-winning author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man and a traveling advocate for patients with the neurological disorder with Clusterbusters, Inc.
Nicole Hemmenway
lookingforthelight.blog 