Calling for A Culture of Caring

Real World Health Care_____________________________________________________________________

Ruth Lippin, LCSW, JD

When someone becomes ill with a chronic disease such as cancer or multiple sclerosis, theirs is not the only life that changes. Indeed, their illness can impact friends, co-workers, and most particularly, their family members. Nowhere is that impact felt more strongly than by the family caregiver: the person whom the sick loved one counts on to provide the aid, comfort and care they need to supplement the professional care they receive from their health care providers.

According to Ruth Lippin, LCSW, JD, the role of the family caregiver has evolved over the past century. Lippin, a cognitive behavioral therapist who also runs a geriatric care management company, said that in previous generations, extended families lived together longer, making it easier for individual family members to “pitch in” when help was needed.

“Today, our country places a higher value on individualism,” she said. “We’re no longer a culture in which we take care of each other. Asking for or needing help is often seen as a sign of weakness instead of being embraced. People with chronic illnesses are vulnerable, and they need the protection of our society.”

Reluctant Patients, Resentful Caregivers

Taking care of a loved one with a serious illness changes the family dynamic, especially when the caretaker is an adult child, said Lippin.

“It’s a complete transformation of the relationship from one of being cared for to one of having to be the caretaker,” she explained. “The ill parent may be reluctant to be taken care of, and the adult child often isn’t used to asserting their authority or conducting the type of care tasks that aren’t part of the ‘normal’ course of development for a parent/child relationship.”

“Consider an adult child whose parent has Parkinson’s disease and should no longer be driving,” she offered. “How do they cope with the worry that their parent may hurt themselves or others while driving? How, as their child, do they assert authority to take away the keys?”

Lippin said that it’s not uncommon for caregivers to feel guilty, stressed, anxious and depressed while caring for a loved one. Resentment also can grow quickly, especially if the family caregiver feels “forced” into taking care of their loved one or does not receive the support they need from siblings or other family members.

“Caregivers face an internal conflict about exactly what one owes another person by virtue of being a blood relative or having loved them, in the case of a well spouse caring for an ill spouse,” Lippin explained.

Financial stress also can take its toll if the ill family member can no longer work, or if the caretaker has to leave their job or cut back on hours to provide the care their loved one needs.

“I had a client with a thriving freelance business who ended up on Medicaid while taking care of her elderly mother because she could no longer work the hours she needed to support herself financially,” Lippin said. “I would much rather have a loving, doting aide caring for me than a resentful family member. Unfortunately, a family caregiver is often the only solution because hiring a live-in caretaker or full-time aide is cost-prohibitive for most people.”

Setting Boundaries and Seeking Help

Lippin said that it’s crucial for family caretakers to set boundaries to avoid emotional burn-out and the negative biological affects that too much anxiety and depression can have on their central nervous system.

“I often see caretakers who stop taking care of themselves while they are taking care of a loved one,” she said, noting that 30 percent of caregivers die before their ill loved one. “They may skip doctor’s appointments because they can’t or won’t leave their loved one alone. Or, they may stop taking their own medications if finances become an issue. One client’s very ill spouse outlived her by many years because she stopped taking care of herself to care for him.”

Lippin is adamant that caregivers need to take care of themselves as well as their sick loved one.

“Do something for yourself a couple times a week,” she suggested. “Meditate, take a yoga class or join a support group with people who understand exactly what you’re going through. Realize that you aren’t in this alone and that you shouldn’t be expected to give and give without receiving some care of your own.”

“Caretakers also can benefit from professional help available through a therapist,” she said. “A professional therapist will provide a compassionate ear and listen to their concerns without passing judgement. Together, the therapist and caretaker can formulate a plan to help them decrease their stress, anxiety, depression or other mood disorders.”

Even if seeing a therapist or hiring an aide for their loved one is not an option financially, there are a range of free online and in-person support groups and self-help information available said Lippin, pointing to resources available through her professional society, the Anxiety & Depression Association of America.

Through the ADAA website, caregivers can learn more about mental health signs and symptoms, read tips for restoring mental wellness, and join a free, anonymous online support group.

“Seek help,” Lippin urged caretakers. “As a caretaker, you need someone caring for you too.”

Read this article online at Real World Health Care.

NASH: A Disease without Symptoms but Lots of Hope

Real World Health Care_____________________________________________________________________

Wayne Eskridge

by Wayne Eskridge, President & CEO, Fatty Liver Foundation

What if you had a liver disease but nobody told you until it was too late?

Typically, nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are silent diseases. They have no symptoms. Even if cirrhosis has developed, there are often no symptoms until the liver has become so damaged that the only option is a liver transplant.

Early screening for NASH is essential, but obstacles abound. While there is a quick, easy and economical method to screen for fatty liver disease, it is not widely available and screening in the absence of symptoms is often not part of standard medical practice policy. Medical coverage for the test also may not be available if the patient isn’t sick or doesn’t have symptoms.

Fatty Liver Foundation Screening Project

The Fatty Liver Foundation advocates for early screening. Our plan is to deliver liver care screening for the estimated 40 million co-morbid diabetes/NAFLD/NASH patients. This patient group is our initial target for screening because up to 70 percent of type 2 diabetics have undiagnosed liver disease. The project’s long-term goal is to have 400 testing locations seeing one million patients a year.

 

 

The screening project is currently in its pilot phase. The first installation is in the greater Houston area and the purpose is to gather real world data on self-selected patients and to test methods and procedures to provide guidance to the larger project to follow. The study is being conducted as a formal study which can be read here as NCT03726827 on ClinicalTrials.gov.

State of Liver Research

While attending the 2018 meeting of the American Association for the Study of Liver Diseases (AASLD), I was struck by the sheer volume of research going into NAFLD/NASH/cirrhosis and how the evolution of new tools and probes coming from the broader arena of basic science is helping us along our journey to understand the liver.

The black box nature of many of the liver’s functions is giving way to a real understanding of the specific chemical reactions between and within the cells. The study of lipids within the liver and body-wide is burgeoning, as fatty acids are both foundational molecules and dose-related substances involved with disease. The study of cellular response – such as how stellate cells are affective by different molecules — is robust.

Stepping up a level from how molecules work, researchers also are studying how the systems of body processes interact in ways that either lead toward health or toward dysfunction and illness. For example, scientists are investigating how liver fat responds to manipulation of certain thyroid hormones.

Then, we step out to see how body-wide functions like inflammation, wound management, tissue health, immune response and other processes lead to liver damage or may be recruited to promote healing. Here, the issue of comorbidity comes into focus as we look at the liver’s relationship with cardiovascular and diabetic disease, as examples.

The meeting also showcased the significant work being undertaken on non-invasive markers for primary care-level triaging of patients with active disease, but who present as symptomatic. One of the most interesting developments was the documentation of the role that Fib-4 might play in the process. There is growing evidence that Fib-4, and several other blood-based candidates used as filters for screening, can help to determine referral to a specialist.

As a patient, being able to see the depth and breadth of the effort whose goal is to save my life, and that of the millions of patients like me, was both humbling and exhilarating. The knowledge that research will lead to solutions makes the day-to-day easier to bear and gives us patients a reason to find hope.

About the Fatty Liver Foundation

The Fatty Liver Foundation is dedicated to identifying asymptomatic, undiagnosed Americans with liver fibrosis or early cirrhosis caused by fatty liver disease, and to educate them on the lifestyle changes needed to halt or minimize progression of the disease. Here is a link to a brief video about the Foundation. Founder and CEO Wayne Eskridge was diagnosed with cirrhotic NASH in 2010 and since then has been dedicated to learning as much as possible about the disease and to helping other liver disease patients. For more information, visit the Fatty Liver Foundation website, or connect via Twitter.

Read this article online at Real World Health Care.

The Cascading Effect of Migraine Disease

Real World Health Care_____________________________________________________________________

Jim Carleton

By Jim Carleton for the Association of Migraine Disorders

“I never signed up for this”

Quote from a migraine sufferer’s fiancée when he ended the engagement.

How is it possible that such a devastating illness in all its expressions could not have far-reaching, negative effects in all related areas of a migraine sufferer’s life? It’s not, of course. Only recently have we begun to see research that looks at subjects like family burden and the corollary disruption that episodic and chronic migraine causes in the lives of sufferers. Very few of us lead totally isolated lives, devoid of familial connections and other work and relationship associations. More often, the opposite is true. The vast majority of people are interconnected with others through family, relationships and work; these relationships are all compromised by migraine suffering. That’s a lot of people.

Migraine Affects More Than the Patient

In the United States alone, we estimate that there are 36 million migraine sufferers. If we allow ourselves some statistical latitude and cede that each sufferer has two relationships affected by their migraines, the numbers grow exponentially. For the purpose of this argument “collateral” means a person in some level of a relationship with the migraine sufferer. Following this line of reasoning, there are about 108 million people, including the sufferers, whose lives are negatively impacted in a variety of ways. The population of the United States is 319 million at last count. Again, following our assumptions, 34 percent of the U.S. population has their lives disrupted to some degree, by migraine disorders. Remember, this assumption is based on two collaterals only. Most people have more than two relationships. So, if that is the case, the number affected would rise accordingly.

Admittedly, that is a pretty astonishing number. One may question what does “disruption” mean? Migraine sufferers and those that live and work with them would not have any problem answering that question. So, in deference to the two-thirds or so of the U.S. population that may not understand the nature and level of problems caused by migraine attacks and experienced by collaterals, what follows is a less than a complete list. Broken relationships, lost jobs and income, family arguments, emotional distance, canceled family events and vacations, friendships lost, loss of self-esteem (both sufferers and collaterals), anxiety and a host of depressive symptoms, constant worry, and feelings of inadequacy. This list could be expanded greatly, I am sure. But one consequence stands out for me personally in my life with an episodic migraine sufferer: the frustration experienced when I am forced to stand by and watch my loved one’s anguish while being unable to help her in any way.

This brings us to the bottom line: migraine suffering is not limited to the migraine sufferer alone. The misery spreads throughout the lives of associated individuals, not unlike other chronic, disabling conditions. At present, with about one-third of our country’s population touched negatively by this neurological illness, why is so little being done to search for a cure? What will it take?

Some interesting research has been done in the area of caregiver stress. If you would like to read some interesting articles as a follow-up, consider:

Caregiver stress focusing on self-care
http://adrenalfatiguesolution.com/caregiver-stress/

Family support essential to surviving migraines
http://www.practicalpainmanagement.com/patient/conditions/headache/family-support-crucial-surviving-chronic-migraine

CaMEO research studies the burden of migraine on families, among other variables
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430584/

The Association of Migraine Disorders strives to expand the understanding of migraine and its true scope by supporting research, education and awareness.

Read this article online at Real World Health Care.

First in Class Migraine Approval

Real World Health Care_____________________________________________________________________

Emily Burke

By Emily Burke, PhD, Director of Instruction, Biotech Primer Inc.

Editor’s Note: June is National Migraine and Headache Awareness Month. Medical experts don’t fully understand what causes migraines, making the condition difficult to diagnose and treat. This week, Real World Health Care delves into the science behind migraine and its treatment, with this article written by Emily Burke of Biotech Primer. Next week, we’ll bring you insights from the perspective of a family caregiver supporting a loved one with chronic migraine.

Migraine sufferers gained new hope last year when the FDA approved three new first-in-class drugs that prevent the onset of migraines, and significantly reduce the number of migraine days in difficult-to-treat (those that have failed 2 to 4 prior treatments) patient populations. In some patients dubbed “super responders,” migraine occurrence went from several times a month to no occurrence for six months. This is a big breakthrough that will have significant impact on the quality of life for migraine suffers who have not been able to find other forms of relief. Let’s take a look at the science behind migraines and how these new treatments work.

Attack of the Migraine

As many as 36 million Americans suffer from migraines—about 12 percent of the population. More than just a headache, migraines often include symptoms like intense pain, nausea, and extreme sensitivity to light or noise. They can last anywhere from a few hours to days on end. Episodes may be as frequent as several times a month, or as infrequent as a few times a year.

There are three distinct parts of a migraine episode; however, not all migraine sufferers experience these phases with the same intensity. Each set of symptoms is unique to the individual, and can include prodome, aura, or postdome phases.

  • Prodome occurs in the hours or days before a migraine attack. It includes mood disturbances, stiff muscles, and sensitivity to smells or noise.
  • Aura is the period just before the severe pain attacks. Visual distortions are the most common symptom, with sensory or motor disturbances potentially occurring as well.
  • Postdome happens after the actual headache and includes symptoms such as lingering pain and cognitive difficulties.

The Science Behind the Episode

While the exact cause is largely unknown, there are a few theories:

  • Brain Stem Changes: Research by the Mayo Clinic (Rochester, MN) suggests migraines derive from changes in the brain stem and its interaction with the trigeminal nerve. The trigeminal nerve supplies feeling to the face and is considered a pain-associated pathway in migraine attacks.
  • Lowered Serotonin Levels: Another area of active research involves the neurotransmitter serotonin. Serotonin is most often associated with mood—antidepressants known as serotonin reuptake inhibitors increase levels of serotonin in the brain. This neurotransmitter is also implicated in migraine pain pathways, with levels dropping during an attack.
  • Hormonal Link: Migraines are more common in women than men, so a hormonal link may be tied to the causality. There is often a reduction in symptoms after menopause.
  • Glutamate Accumulation: In recent years, a few gene variations that appear to increase the risk of developing migraines have been identified through genome-wide association studies. Two of these genes result in increased levels of the neurotransmitter glutamate, suggesting that accumulation of glutamate in synapses may be a trigger.

This Just In

The hot new kid on the block is calcitonin gene related peptide (CGRP) inhibitors. CGRP spikes during migraine attacks and is thought to play a role in the brain pathways that process pain. The exact molecular mechanism of how the CGRP spike is related to migraine onset is not yet fully understood, but CGRP is thought to sensitize nerves in the face, neck, and jaw, as well as alongside blood vessels surrounding the brain. A 2002 study provided strong evidence of a key role for CGRP in driving migraines. Injecting volunteers who were migraine-prone with the CGRP peptide induced a migraine within hours; injecting volunteers who were not migraine-prone resulted in a mild headache at worst. These studies helped to form the scientific basis for this new class of migraine drugs. The first approved, erenumab, is a monoclonal antibody (mAb) that blocks activation of the CGRP receptor. The antibody binds the receptor but does not activate it, and in so doing, prevents CGRP from activating the receptor.

Fremanezumab and galcanezumab, the other CGRPN inhibitors approved last year, are mAbs directed at CGRP itself. The idea is for the mAb to “mop up” CGRP before it reaches the receptor and triggers a migraine.

Cocktail Fodder: A Headache of the Past

We sometimes blame migraines on the stress of modern living. In some cases, stress is a trigger, but the headaches are hardly a modern phenomenon. Descriptions consistent with migraines are found in the ancient Egyptian medical text Ebers Papyrus, dating from 1550 B.C., as well as Hippocratic texts dating from 200 B.C.

About the Author

Dr. Emily Burke is the Director of Curriculum for Biotech Primer and is responsible for customizing client training, delivering training sessions and writing the Biotech Primer WEEKLY, a free electronic newsletter that explains the science behind the headlines. She received her B.S. in biological sciences from Carnegie Mellon University and her Ph.D. in molecular biology from the University of Southern Alabama.

Readers are invited to subscribe to the free Biotech Primer WEEKLY.

Read this article online at Real World Health Care.

Lung Cancer: Being a Better Caregiver

Real World Health Care_____________________________________________________________________

Deborah P. Brown

This week, Real World Health Care continues our series on caregiving by speaking with Deborah P. Brown, Chief Mission Officer of the American Lung Association. Brown oversees strategic planning and implementation of the Association’s health promotions programs, advocacy efforts and research programs. We talked about lung cancer programs and services offered by the Association for both patients and their caregivers.

Lung Cancer a Top Priority

Real World Health Care: The American Lung Association has a broad lung-health mandate. Where does lung cancer stand in terms of your overall mission?

Deborah Brown: The American Lung Association envisions a world free of lung disease. Our mission is to save lives by improving lung health and preventing lung disease, as well as to reduce the burden of lung disease on patients and their families. Lung cancer is a priority for the Association, and supporting caregivers is an important aspect of what we do.

Support for Lung Cancer Patients and Their Caregivers

RWHC: How does the American Lung Association help lung cancer patients and their caregivers?

DB: Being diagnosed with lung cancer is difficult. It quickly becomes overwhelming as people process their diagnosis, cope with their emotions and try to navigate the health care system.

We support lung cancer patients and their caregivers by providing comprehensive educational content at www.lung.org/lung-cancer. Our content navigator tool tailors information to each person’s journey, whether they’re a patient, caregiver or health professional. We also offer a toll-free Lung HelpLine at 1-800-LUNGUSA that provides expert bilingual guidance from nurses and respiratory therapists.

Because lung cancer patients and their caregivers value being able to speak directly with others who are in their shoes, we offer a free online support community. It’s a wonderfully caring and kind community of people facing similar challenges.

We also offer a number of resources dedicated to caregivers, including articles, videos, tips sheets and more. These resources cover everything from how to talk about lung cancer and cope with your emotions to self-care tips and how to prepare for the future.

Caregiving is Emotionally and Physically Draining

RWHC: How can family caregivers address the challenges they face when caring for a loved one who has lung cancer?

DB: Being a caregiver in any capacity can be emotionally and physically draining. We believe that family and friends can be better caregivers and advocates by understanding their loved one’s journey and their needs throughout the ups and downs of treatment. Because lung cancer patients are often immuno-compromised, it’s important for caregivers to stay as healthy as possible and up-to-date on their flu shots and other vaccines. And it almost goes without saying: they should never smoke around a lung cancer patient.

When caring for a loved one with lung cancer, it’s important to keep in mind that anyone can get lung cancer, regardless of prior smoking history. However, if the patient has smoked in the past, they may feel guilty and ashamed. Caregivers should reiterate that they are not to blame for their cancer and that they need to let those feelings go.

Caregiving Tips

RWHC: What sort of advice would you give to family caregivers?

DB: Let your loved one know you love them, you are there for them and you are ready to help them, no matter what. Learn as much as you can about lung cancer so you are better able to advocate for them and help them navigate the health care system. The priority is making sure they get the best possible treatment they can.

Understand your loved one’s boundaries. Some patients want their lives and activities to go on as normal and don’t want a lot of help, while others may feel overwhelmed and need assistance. Respect the wishes of your loved one so you can give them both the assistance and the space they need. Open communication is key. However, be mindful of your role. Your loved one may or may not want to tell people about his or her cancer. Do not share information meant to be kept private

We offer a full range of caregiver tips on our web site, and I encourage your readers to visit the site to get more detail. They can learn about the importance of:

  • Keeping appointments and following treatment instructions.
  • Getting to know the patient’s care team.
  • Letting the patient speak first during doctor appointments.
  • Helping the patient stay organized.

Taking Care of the Caregiver

RWHC: How can someone be a better caregiver?

DB: Accept that it’s normal to feel a wide range of emotions. While a positive attitude can improve both your and your loved one’s moods, it can be easier said than done. If you have a hard time staying positive, confide in someone you can trust. Talking about your feelings with a therapist or social worker specializing in cancer may be beneficial.

As mentioned before, stay healthy by staying up to date on your doctor visits and vaccinations. Get plenty of sleep, eat a balanced diet and try to do some form of physical activity every day. Allow yourself to take breaks from caregiving to recharge yourself.

Ask for help if you’re overwhelmed. Use your support system to help you run errands or do chores. Stay in touch with family and friends. Join a support group for caregivers. Some people find strength and support in religion and faith-based organizations.

Remember that every question you have is worth asking. Sometimes medical providers don’t bring up topics because they aren’t sure you want to hear about them. Don’t wait for the doctor to start all of the conversations. Ask all of your questions and make sure they get answered in a way you understand.

Read this article online at Real World Health Care.

Talk about your Health Care Choices before you’re Faced with a Crisis

Real World Health Care_____________________________________________________________________

Sjogrens

By Jon Radulovic, Vice President, Communications, National Hospice and Palliative Care Organization

A family is gathered by the bedside of a loved one who has been seriously ill, and now is likely near the end of life. Each member of the family has a different idea of what should be done and what their loved one would have wanted. That’s the point when the loved one and their family caregivers realize they should have planned ahead and talked about the care they would want in a medical crisis.

Heartbreaking scenes like this happen far too often.

The National Hospice and Palliative Care Organization encourages families to spend time talking about the care they would or would not want long before a medical emergency is at hand. This is particularly important when family caregivers are coping with a serious or life-limiting illness of a loved one.

Advanced Care Planning

Having discussions about one’s health care wishes is part of advance care planning.

Advance care planning involves making decisions about the care you would want to receive in a medical crisis that might be the result of a serious illness or an unexpected accident.  Advance care planning also involves deciding who will speak for you if you are not able to speak for yourself.

An essential part of advance care planning involves having these important conversations with your loved ones – and then completing the documents that will reflect your wishes.

Advance care planning also includes:

  • Deciding what types of treatment you would or would not want should you be diagnosed with a life-limiting illness or faced with a serious medical crisis. For some people this might include all possible medical interventions while others would prefer to make quality of life a priority.
  • Sharing your personal values and beliefs with your loved ones, caregivers and your health care professionals. Additional people to talk with might include a leader of your faith community or close friend.
  • Completing an advance directive to put into writing what types of treatment you would or would not want.
  • Designating a person as your health care power of attorney (sometimes called a health care proxy) to speak for you if you cannot speak for yourself. In some states, the advance directive form includes the health care proxy, other states make this an additional form.

Resources for Caregivers

NHPCO’s CaringInfo.org offers free state-specific advance directive forms and free information to help families talk about the care they would want. Visit caringinfo.org/planningahead.

Hospice and palliative care providers see how difficult it can be for families that have never talked about care choices and are in a crisis situation. Similarly, they see how beneficial it can be when the priorities at life’s end have been discussed and are clearly understood.

Not only is it important for each of us to clearly make our wishes known through advance care planning but it is one of the most important gifts we can give to our families and loved ones.

Read this article online at Real World Health Care.

Sjögren’s Syndrome: Reflections of a Caregiver

Real World Health Care_____________________________________________________________________

Sjogrens

By Jonathan Morse, MSc, member, National Board of Directors, Sjögren’s Syndrome Foundation

April is Sjögren’s Awareness Month. This article is reprinted with permission of the Sjögren’s Syndrome Foundation. It was originally published in The Moisture Seekers, Volume 37, Issue 03.

Today is not terribly different from any other day. It begins….slowly.

There is no way to know how my wife will feel. Will it be a sick day? Will it be a pain day? Will it be both?

I know these questions are not helpful. Instead, I need to know what to do and what to say. Instead of questions, I need to project happy thoughts and find the sunshine.

The role of Caregiver is demanding, unselfish and ever-present. The role requires an ability to not just listen, but to hear and then measure the appropriate response. Because my wife does not want help with everything. She still wants to preserve whatever bit of independence she can, because she has already lost so much. My tendency is to react, to offer to do everything.

It was not always like this. She used to be able to do so much more: clean the house, go for a run, take an exercise class, take a spin class, work in the garden, have a job, have a schedule – get up and go.

Over the many years of battling Sjögren’s, so many therapies and medications have been tried. And while the disease chose its own paths of advancement, the therapies and medication side effects have imposed their own blend of affect, interaction, ineffectiveness and ultimately uselessness.

The search for better and more effective treatment is endless. I spend an infinite amount of time reading blogs, web sources and drug explanations. Visits to specialists have become routine. The challenge in every encounter is to both cram as much background in as possible to set the table (mindful of the allowable 11-minute interval) then mine for gems that are actionable and deliver hope.

Difficulties managing the total body sickness are trumped by overcoming crushing fatigue, containerizing and filing pain, and the sense of loss: the feeling of what was this body, what activities used to be possible, time spent with friends and family, and possessing the energy to live are all different.

To look at my wife you may think “but….she looks fine.” Yes, she looks good. But I know the depth of the battle, the dimension of sickness, the crush of pain that no one else can see. I know the extraordinary effort it takes for her to simply get up and get ready to go. Everything hurts. The shower water hurts. Standing on bare feet hurts. Food hurts.

And still we get up and go places. We see people. And when she’s asked how she feels or told she looks and sounds better, she replies, “I’m fine.”

So many things have been taken away by Sjögren’s. Friends and even family members don’t know what to say, so many stay away. They simply can’t listen, comprehend, or empathize. They assume she is a burden, so they don’t include us in their plans. Sadly, family is precisely what my wife and I need — they serve as fuel to flush away the fatigue, silence the body sickness, and file the pain away.

So we come to a fork in the road. Should we be honest with friends and family as to the level of sickness and the level of life’s change? Or, should we withhold, internalize, and privatize as insulation to prevent any further pain and loss?

Loneliness has set in. For my wife, the loneliness comes from the thought that few — maybe no one — understands what living with Sjögren’s is like. No doctor, no specialist, no pharmacist…no one knows.

The same holds true for me, her caregiver. Dare I even say, “what about me?” Does anyone know what it’s like to watch a person you love slowly disintegrate? Does anyone understand the feelings we caregivers have — the helplessness, fear, hurt, sadness, guilt and loneliness? In a sense, we are bystanders with a close-up view of the tick-tock, tick-tock disease progression, treatment side effects, discomfort, and pain. Yet, we are powerless without tools to help.

I use the term ‘right-size’ to describe the types of activities we can do. The plans I make (suggest) are ‘right-sized’ to my wife’s daily ability level. I push aside the things we used to do, or more accurately stated, can no longer do. Instead I suggest, “let’s go shopping,” “let’s go for a walk,” “let’s go to a movie.” As caregiver, I have ‘right-sized’ my activity to the mutually acceptable level of the patient.

Through it all, we caregivers stay positive, strong, and resolute because there is no other choice.

To all the Caregivers out there, you possess the power to instill the seed of possibility, of promise and of hope. Smile.

Sjögren’s Syndrome Foundation is an organization driven to educate patients and their families, increase public and professional awareness and encourage research into new treatments and a cure. For more information, visit www.sjogrens.org.

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Lung Cancer Caregivers in the Spotlight at COPE Summit

Real World Health Care_____________________________________________________________________

Katie Brown, OPN-CG

This April marks the LUNGevity Foundation‘s second COPE Summit, held during its 9th Annual International Lung Cancer Survivorship Conference, April 26-28 in Washington, D.C. Directed toward caregivers of loved ones with lung cancer, the COPE Summit is one of three simultaneous summits at the Conference, which features a full weekend of information, networking and support designed to educate, connect and empower anyone who has been impacted by lung cancer.

“Lung cancer caregivers often report that they feel isolated and unsupported in their communities,” said Katie Brown, OPN-CG, vice president of Support and Survivorship Programs, LUNGevity Foundation. “Lung cancer is a disease with many misconceptions and stigmas. Because of that, there may be a sense of guilt, shame or anger associated with the disease. Unfortunately, practical services and emotional support for patients and their families is lacking in most communities.”

The COPE Summit was created to help bridge that gap, with sessions focusing on relationship issues, practical issues, and caregiver roles and needs. Caregiver burnout and “lone soldier syndrome” will be two of the topics covered. Caregivers and their loved ones will also be able to take advantage of large panel discussions with lung cancer experts.

Lung Cancer Caregiver Resources

The COPE Summit is just one of the many services and resources the LUNGevity Foundation provides for lung cancer caregivers. LUNGevity also offers an online Caregiver Resource Center with articles, videos, caregiving tips and other resources. A toll-free Lung Cancer HELPLine (844-360-5864) connects caregivers directly with oncology social workers and caregiver mentors. Caregiver-specific Twitter chats are held several times a year.

The online Caregiver Resource Center also provides detailed information on end-of-life planning, including legal and financial considerations, hospice decisions, how to prepare when death is near, and tips for coping with grief and loss.

“Many of legal and end-of-life issues should be addressed by all adults, regardless of whether or not they are ill,” Brown said. “If these conversations are too difficult for families, they may want to enlist the help of an oncology social worker, patient navigator or therapist.”

Self-Care for Caregivers

“It is crucial for caregivers to become educated about their loved one’s diagnosis, and their type and stage of lung cancer,” said Brown. “Our resources will help them help their loved one and will also help them practice self-care, which is equally important.”

Brown added that caregivers need their own practical and emotional support system. She encourages caregivers to ask for help and accept help when it’s offered. She also advises caregivers to take breaks from caregiving when they can and get as much rest as possible.

Editor’s Note: The LUNGevity Foundation’s mission is to make an immediate impact on increasing quality of life and survivorship for people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support and education for all those affected by the disease. LUNGevity’s ultimate goal is a world where no one dies of lung cancer. For more information, visit www.LUNGevity.org.

Read this article online at Real World Health Care.

MS Care Partners Crucial to Circle of Support

Real World Health Care

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Angel Blair, MA

This week, Real World Health Care closes our observance of MS Awareness Month by highlighting the Multiple Sclerosis Association of America (MSAA) and the full circle of support it offers to patients and their care partners. We spoke with Angel Blair, MA, client services specialist, who stressed the importance of understanding that while MS has a big impact on patients, it also impacts the patient’s entire family.

Physical and Emotional Support for MS Patients

Real World Health Care: What are some of the biggest challenges facing family care partners of people with MS?

Angel Blair: Family care partners often need to address a variety of challenges, from helping their loved one with activities of daily living such as cooking and bathing, to managing care decisions and financial issues, to making modifications within the home, such as adding entrance ramps, stair lifts or roll-in showers. If their loved one has mobility issues, they may need to help them with moving from one place to another – such as physically transferring them into and out of a wheelchair or driving them to appointments.

Many care partners faced with these challenges find that time management becomes a big issue, especially if they are working outside of the home. They also tend to neglect their own physical and emotional well-being, which is pushed aside to focus on their loved one.

These stresses of providing physical and emotional support to their loved one become acute when the care partner is the sole caregiver, with nobody else to rely upon. That is why care partners must seek out additional resources for help. Seeking help should not be seen as a sign of weakness, but rather a sign of strength.

RWHC: How can MSAA help care partners get the support they need?

AB: Our bi-annual magazine, The Motivator, regularly addresses topics for care partners. We host a number of educational programs around the country for patients and their care partners. Our web site contains on-demand videos and webinars as well as our MS Conversations blog. Plus, we have a number of ways people can access live help from an MSAA client service specialist: through our toll-free Helpline (800-532-7667, extension 154), a dedicated email address for MS-related questions, and online MS chat feature.

Through these various touchpoints, we can help care partners find resources and assistance in their local communities, whether that be financial assistance programs, respite care services, home care waiver programs, assistive equipment services, support groups or counseling services.

We also help to connect care partners with others who are experiencing similar issues through our online My MSAA Community forum, a peer-to-peer online forum for individuals with MS, their families and their care partners to share information and their experiences in a friendly, supportive and safe community.

MS Awareness Month

RWHC: Have you been doing anything special for care partners during MS Awareness Month?

AB: Yes. This year we are particularly focused on the theme of “MS and the Family” and have highlighted issues of particular interest to care partners, with webinars, podcasts, and “Ask Me Anything” online events. For those who may have missed the live events, everything is archived on our MS Awareness Month web site.

Progressive MS

RWHC: How do caregiver challenges change when the loved one’s disease course progresses, for example to Secondary Progressive MS?

AB: In many cases, it’s an issue of the same challenges, just more of them. When MS progresses, it’s important for care partners to work with their loved ones and their health care team to re-assess the current level of at-home care and determine if it is appropriate. Their loved one may need more assistive equipment or additional home modifications if their mobility decreases, for example.

Discuss issues openly and honestly. Are cognitive problems increasing? Can the loved one be left alone for extended periods of time? Can the care partner physically help to move their loved one in and out of bed, in and out of the bath, and in and out of the car? Answers to these questions will help the loved one and their care partner decide if additional assistance is needed.

MS progression also may require additional medications and therapy services and involve more paperwork and financial commitments. The cost of these additional treatments, coupled with the cost of nursing or home care and additional respite services for the care partner, often lead to stress for all parties.

Stepping in to Care for an MS Patient

RWHC: What are some of the signs that it is an appropriate time for a family member or loved one to step in and become an active care partner for someone with MS?

AB: MS affects every patient and family in a unique way, so there is no one universal “sign.” However, care partners should pay close attention to their loved one’s behavior. If they become particularly depressed, agitated or forgetful, it may be an appropriate time for the family to step in. If they start to have trouble caring for themselves or their home, they may need assistance. If their symptoms result in balance or mobility issues and they start to have accidents, that’s another indication.

It’s crucial at these early stages for the patient to be directly involved in decisions around family caregiving. They should provide input on how they’re feeling, ask questions, and be clear about the level of independence they’re comfortable with. Many people with MS find it’s helpful to focus on the things they can do rather than the things they can’t do. Some even look at it as an opportunity to learn or try new things or pursue new activities or hobbies.

Care partners must remember to not push if their loved one doesn’t accept help right away. Instead, meet their loved one where they are in the moment, letting them know that help is available when, where and how they need it.

The Multiple Sclerosis Association of America (MSAA) is a national, nonprofit organization founded in 1970. It is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners. For more information, visit https://mymsaa.org.

Read this article online at Real World Health Care.

Navigating Secondary Progressive MS

Real World Health Care

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Kathy Costello, MS, ANP-BC, MSCN

Real World Health Care continues our observance of Multiple Sclerosis Awareness Month by shining a spotlight on the National Multiple Sclerosis Society. We spoke with Kathy Costello, MS, ANP-BC, MSCN, associate vice president of Healthcare Access for the National MS Society, about the Society’s MS Navigator program and strategies that patients with Secondary Progressive MS can adopt to help them manage their disease and its impact on their daily lives.

Diagnosing Secondary Progressive MS

Real World Health Care: Secondary Progressive MS (SPMS) can be difficult to diagnose. Why is that?

Kathy Costello: SPMS is an MS disease course that follows Relapsing Remitting MS (RRMS). Most people diagnosed with RRMS will eventually develop SPMS within about 15 years of their initial MS diagnosis. A patient needs to go through about six months of observed progression of neurologic symptoms, in the absence of a relapse, before SPMS is considered to be the disease course.

Because the transition from RRMS to progressive MS is gradual, physicians may not be able to tell exactly when it occurs. If the worsening symptoms are left over from the last relapse, with permanent but stable damage that remains after the inflammatory attack has ended, the patient is considered to be experiencing an RRMS disease course. However, if the disease continues to worsen even though the person is no longer experiencing inflammatory relapses, they have transitioned to SPMS. Diagnosis takes on further nuances when you consider that some patients with SPMS may still experience relapses from time to time and may demonstrate new inflammation in their brain and spinal cord, though this doesn’t occur as frequently as during RRMS

Impact of Progressive MS on Daily Life

RWHC: Is there a difference between SPMS and other stages of MS in terms of its impact on a patient’s daily life?

KC: No matter what type of MS someone has, impacts are the result of damage in the central nervous system. The central nervous system is our command center: the spinal cord governs our movement and other functions, while the brain manages higher level functions and interprets messages. MS interrupts those functions, which translate into symptoms such as generalized fatigue, slowed thinking, changes in vision, coordination problems, weakness, walking difficulties and even loss of bladder and bowel control.

With progressive forms of MS, including SPMS, those symptoms will worsen over time. Patients will experience more fatigue and more difficulty walking, for example. These worsening symptoms make it harder to participate in work, social life and activities of daily living at home. It’s important to note, however, that MS is heterogeneous. No two people with SPMS will be exactly the same. One person may have a tremendous amount of impairment while another may have far less, or may have a different type of impairment. When people hear the word “progression,” it can be frightening and can conjure images of wheelchairs, dependency and an inability to participate, but that’s not always the case.

RWHC: It sounds like the progression of MS affects not only the person with MS, but also the people around them as well.

KC: True, especially when it comes to the patient’s family. Most families and households have defined roles and responsibilities. When MS symptoms start to interfere with a patient’s activities, those roles may need to change. Frustration, anger and feelings of guilt can exist on both sides: from the patient who can no longer participate as she/he did before MS, and from the family members, who may need to assume more household or other roles over time.

The financial burden of MS can also put a strain on family dynamics, especially if the patient can no longer work or has a reduced earning potential because of MS symptoms. MS is remarkably expensive, even with insurance, which may not cover the entire cost of medications, rehabilitation or assistive devices like walkers and wheelchairs.

SPMS Treatments and Management

RWHC: Are there any treatments on the horizon for SPMS?

KC: There is an enormous amount of research going on in progressive forms of MS. One medication for SPMS, siponimod, has completed its clinical trials and is currently under review by the FDA. A decision on approval is expected very soon. Other treatments, including high-dose biotin, also are being studied.

With $32 million dedicated to research in 2019, the National MS Society is the largest private funder of MS research, and 94 percent of our research portfolio is relevant to progressive MS. In addition to treatment research, we are also funding research into better understanding the disease process, as well as lifestyle and rehabilitation-related management strategies.

We’re also a founding member of the International Progressive MS Alliance, which is accelerating research with an eye toward appropriate measurement metrics during clinical trials, how imaging or blood tests may be used to identify someone at risk for progression, and treatments that can slow or halt the process of progression.  Of course our ultimate goal is a cure.

Support for SPMS Patients

RWHC: How is the National Multiple Sclerosis Society helping to support patients with SPMS?

KC: Among the many services and programs we have nationwide, our flagship programs here at the National MS Society is our MS Navigator program. The program matches patients with highly skilled, compassionate professionals who can connect them to the information, resources and support they need to meet the many challenges imposed by MS. MS Navigator offers a live, online chat function as well as a toll-free phone number at 800-344-4867. Patients can also connect via email and through our MSconnection.org community discussion board.

If our MS Navigators identify someone with highly complex needs, we refer them to our case management program, the Edward M. Dowd Personal Advocate Program. This program connects patients with case management organizations and individuals in the patient’s local community. We help to train those case managers so they are highly knowledgeable about MS, and we help them work toward solutions for patients.

I would also like to point out our Healthcare Access team, who work with healthcare professionals to ensure providers of all disciplines become more knowledgeable about MS and the services and expertise we offer The National MS Society funds a number of programs to ensure the workforce of the future including a medical student mentorship program to foster interest in a career in MS care, clinical fellowships for physicians who wish to specialize in MS care, and an MS track in 3 doctoral level physical therapy programs.

The National MS Society encourages SPMS patients to be as proactive as possible in mitigating the effects of MS. The disease gets worse when people develop co-morbid conditions such as cardio-vascular disease, so it’s important to follow a healthy eating plan, stay as active as possible, maintain a healthy weight and quit smoking. Depression is common in MS patients, and mood disorders can keep people from staying on their medications and participating in a healthy lifestyle. Above all, don’t suffer in silence. Speak up about any symptoms of stress or depression so that effective interventions can begin.

Read this article online at Real World Health Care.