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CareNovate Fall/Winter Issue #2. 2013 Our Hashtag is #Carenmag
Gluten Food Labelling Update Great News!!!
Magazine The Caregiving + Health Literacy
Issue
Kayak of Geriatric Care
Expert Interviews
Denise Brown. Helen Osborne. Joni Aldrich.
Cariloop Role Switch Caregivers, Nurses At Home?
Doctor Graduates from Elder Care Options
Part 2
Chemotherapy!
A SOCIAL HEALTH & MEDICATION LITERACY PUBLICATION www.carenovatemag.com
8 Magazine/January, 2012
CareNovate Magazine raising breast cancer awareness Not just in Ocober but
everyday!
FACTS ABOUT BREAST CANCER Breast Cancer is the most frequently diagnosed cancer in Women worldwide }{}{}{}{}{ It is the leading cause of cancer death among Women globally @@@@@@ More than 50% of women over the age of 40 fail to get a mamogram on an annual basis )()()()()()()()()( Less than 5% of US breast cancer cases are in women under 40 ooooooooooo 1 in 8 US Woman will be diagnosed XXXXXXXXXX Breast cancer death is 41% higher in African American women than Caucacian women although the incidence is lower ============== Every 3 minutes, a women is diagnosed :::::::::::::::: Over 2000 men will be diagnosed with breast cancer in 2013 ###########
Do your self breast Examinations. Schedule Your Mamogram Today. 3 Magazine/Issue #2
CareNovate Magazine The offical publication of CareNovate, LLC Fall/Winter 2013. issue #2 www.carenovatemag.com Dr. G. Erowele, Editor in Chief info@carenovate.com Mr. K. Erowele, MBA, Publisher Dr. Ketra Ikezuagu, Dr. Ojey Ikezuagu: Medical Editor/Reviewer Drs. Darlington & Dr U. Ojiaku: Medical Advisors CareNovate, LLC - Publisher Contributing Writers: Dr Gia Siason, Michelle Seitzer, Angil Tarach-Ritchey RN, GCM Advertising/Partnership/ Sponsorship Inquires Media Kit or info@carenovate.com Question, Comments, Letter to the Editor info@carenovate.com Stay Empowered, Inspired & Motivated Editorial Office 9119 Hwy 6, Suite 230, Missouri City, TX 77459 832.589.007. Email: info@carenovate.com @CarenmagFacebook.com/carenmag
4 Magazine/Issue #2
S T N E NT
CO IN EVERY ISSUE
6 Editors Note 7 Events -IMPACT80 Virtual Summit 201411 Readers of CareNovate Magazine 18 Books That Inspires HEALTH LITERACY 16 Carenovate Magazine Health Literacy 38 Q & A with Health Literacy Expert. Ms. Helen Osborne MEDICATION SAFETY 10 Discover your pharmacist super powers 10 Celebrate Pharmacist Month! 27 Be Medication Smart & Acetaminophen Awareness Video 28 FDA Update on Gluten Food Labelling CAREGIVING 12 Senior Care Living Series - Private Duty 20 Being the Nurse At Home: When Family Caregivers Become Healthcare Workers FEATURES 23 Dr Gia Siason - Doctor becomes breast cancer patient and musing on Life 101 29 Micheal Walsh, behind the Kayak of Geriatric Services 34 Denise Brown on providing the very first online support to Caregivers 41 Joni Aldrich - Caregiver x 2, to mum & husband
Many Thanks to Our Contributiors. ~ CareNovate Magazine
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EDITOR'S NOTE Dear Reader, Humbled, gratitude and grateful are the words that comes to mind when I think about the birth of CareNovate Magazine and how it has crawled and now walking... We are so thankful for your support, words of encouragement, suggestions and emails. We love them all, so please keep them coming. In this caregiving + health literacy issue, we introduce to you amazing folks who are doing innovative things in the caregiving and health literacy space. Exciting interviews with Denise Brown, a pioneer in online support for caregivers and Helen Osborne, the Health Literacy expert with accolades to prove it. We celebrate the lives of all caregivers, families, women and men who has been affected by breast cancer. We are honored to share a survivor story of a physician, patient advocate who became a breast cancer patient. Read her musing on life after graduating from chemotherapy. We also bring you Cariloop, dubbed the "Kayak" of geriatric care service. Learn about this new innovation. Our awesome elder care nurse and author continues to educate on her "Senior Care Living Options" part 2 of 8, focusing on private duty home care. Remember all logos and links are clickable to instant access to our resource page, contributors websites, products and services. Don't forget to take care of yourself.
Goldie
Remember, in Health & Care
Edito in Chief LOVE - All your emails. Continue to send them to me: info@carenovate.com
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I hope you find this issue filled with inspiration. Thank you so much for reading, commenting and sharing CareNovate Magazine. Continue to share the magazine with friends and families via Facebook, Twitter, Instagram and Pinterest. Don't forget to take care of yourself.
Tips for clear health communication
–Bring a friend or family
member to help –Make a list of health concerns to discuss with your provider –Make a list of current medications –Ask your pharmacist when you have questions about your medications
IMPACT
80
Global & Live Virutal Event Conversations
By Women for Women & Caregivers
*
February 11th, 2014 About Caregiving. Health Care Social Media. Women's health. Health Literacy. Cost of Health Care. Medication Safety. & Much More
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ACTION OF A TRUE CARENOVATOR *********************
“Takecareof yourbody; it’sthe onlyplace youhave tolive” –Jim Rohn
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October is CareNovate Magazine Message Pharmacists are medication experts!
Pharmacists truly are the last line of defense against medication dosing errors, drug interactions, and allergy screening. It's true. While you are a the drugstore or grocery, take the time to speak to your pharmacist, ask questions and plan to have them review your entire medication profile, including over the counter (OTC) medicines, vitamins and herbal supplements. Inform them of your health conditions, medication and food allergies, and let them know if you prefer to utilizing cost-saving generic medications. By maintaining an ongoing relationship with your pharmacist, you can help to protect yourself and your family. Get to know your pharmacist – always your partner in good health. Over The Counter (OTC) Vitamin D aids in the absorption of calcium, helping to Medication Tip: form and maintain strong bones. Several studies have debated the adequate dose of Vitamin D. A critical study Vitamin D finds that Vitamin D 600 - 800 iu per day is sufficient
KEY POINTS: Before taking any OTC medication, please discuss with your doctor, provider or pharmacist to make sure that it is safe or even necessary. To avoid vitamin D deficiency at all ages and to optimize bone health in adults and older patients, according to authors of a recent review of randomized controlled clinical trials. SOURCES: Bouillon R et al. Optimal vitamin D status: a critical analysis on the basis of evidence-based medicine. J Clin Endocrinol Metab. 2013;98:E1283–E1304. 10 Magazine/Issue #2
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"Carenovate Magazine is a valuable resource for caregivers of all kinds. Many times, caregivers are so focused on their loved ones, they neglect to attend to their own needs. I'm grateful that a publication such as Carenovate Magazine exists to help those of us who are so busy looking out for others that we often miss looking out for ourselves." Ms Starks of Misty Blue Media Caregiver to Mom
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11 Magazine/Issue #2
enior Care Living
Series S
Private Duty Homecare Part 2 of 8
BY ANGIL TARACH-RITCHEY RN, GCM In part 1 of the series, I provided an overview of adult day care programs. When families find themselves in need of care for an aging loved one many are caught off guard without knowing much, if any, about the different types of care options and how to choose. Education empowers you to make appropriate decisions and this series is intended to help you do exactly that. In part 2, we will review private duty home care WHAT IS PRIVATE DUTY CARE? Private duty home care is nonmedical care and is often referred to as custodial care. The services are provided by caregivers or certified home health aides, which may vary by state regulations or the hiring practices of an individual agency when the state lacks regulations. Services are designed to help the patient remain in their home as independently as possible or to provide respite (a break from caregiving) for family caregivers by providing assistance with companionship, errands, and medication
reminders. Some private duty agencies transport clients, some do not. Agencies that offer both home health and private duty may offer privately paid nursing, therapy and social work, but few can afford or utilize private duty healthcare, so for our purposes I am only referring to the services of a home caregiver who does not perform any medical procedures or services. Private duty homecare services are determined by the patient and/or the family. This type of care is not covered by health insurance. Private duty homecare may be on the recommendation or even insistence of physicians, hospital or rehab discharge planners, or home health nurses. Most private duty homecare services are paid out of pocket, but they may be covered in part or whole by Long-Term Care (LTC) insurance or Veterans benefits. Individual states may have programs providing limited private duty home care for low-income residents generally through a state Medicaid program, but in my experience, the number of residents who can qualify for services is very limited.
According to the Private Duty Homecare Association, (PDHCA), Private Duty home care organizations provide broad range of services from medical and nursing care to bill paying and transportation services. Their goal is to provide whatever the aged, ill or disabled or their families need in order for their loved ones to remain in independence where they most want to be-in their homes.
Magazine/2013 Issue #2
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There is typically a waiting list for these programs or they are closed to new applicants. The agencies that contract with them provide very limited services as directed by the Medicaid program. Check with your local or state Department of Aging for programs available in your area. Funding cuts are being made on a regular basis, so what was available a year ago they may be very different today. Private duty care often works in collaboration with home health agencies or hospice care because the services are very different. Patients who are in need of home health, due to a decline in health, are recovering from surgery or an injury, or have an exasperated chronic illness may also need assistance with activities of daily living (ADLs), such as assistance with hygiene, dressing and grooming, obtaining meals independently, housekeeping, medication reminders, and/or errands to obtain groceries or prescriptions. If family or friends are unable to assist or need time away from caregiving private duty can fill those needs. Many private duty agencies do not involve themselves with health care at all, because most private duty agencies are not owned or directed by health care professionals and often lack the necessary knowledge and understanding of health care needs, but will follow direction and work well with healthcare professionals from medical type agencies. Some private duty agencies are owned by or have nurses on staff or contract registered nurse (RN) who are knowledgeable in healthcare and will often make referrals for healthcare needs, equipment that will aid in keeping the client safe or improve quality of life. They may refer other services that will improve outcomes and quality of life for both the client and family. Some regulated states require private duty agencies to at least contract with an RN.
KEY POINTS Private Duty Home Care – or non-medical home care – is the fastest growing segment of Home Care in America 1. Private duty home care regualtions differs from state to state. 2. Private is not covered by health insurance. 3. Some services may be covered by long term care insurance or Veterans benefits 4. Private Duty services provide patient home visits by non-medical care by un-skilled aides who do light house-keeping, meal preparation and companion services. 5. Unlike private duty homecare, Home Health services is covered 100% by Medicare.
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cannot offer both. This is STATE VARIATION IN PRIVATE part of the reason for the huge range of costs, SUTY HOMECARE in addition to the regional cost of living. If an agency Private duty home care is provides an independent available 24 hours a day/365 days a year. Clients contractor, they are not responsible for providing can obtain services longworkman’s compensation, term or short-term. Some agencies require a minimum unemployment insurance, or deducting employment amount of hours per shift, taxes. They have far less per day, or per week. This control than employeevaries by structured agencies, but the agency, as do the rates, so added protection of check around. Some offer employee based agencies live-in care but this seems comes with a cost. dependent on the state’s overtime regulations for this Agencies with employees, type of work. whether state regulated or not are still required to If a patient is in need of 24 hour care, live-in is typically follow state guidelines for payroll taxes, Workman’s more cost effective if it’s Compensation and typical available, but you’ll want to standards of business in that be sure the caregivers are state. not assigned too many sequential days because Private duty agencies are burnout is high for these not certified by Medicare, caregivers who often get because Medicare does not little rest or time to tend to cover these services. their personal lives. Each state determines whether to regulate private duty agencies, so check with your state to determine whether they license private duty agencies or not. There are no standard protections or standards of care that are required, leaving seniors in a more vulnerable place. Private duty agencies may use independent contractors or hire employees to provide care, but they
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Agencies that have both home health and private duty may appear to be certified but they are only certified in the healthcare side of the company that receives Medicare payments. Their private duty side is not certified by Medicare. This can be misleading to the general public and to those who work in healthcare who are unfamiliar with the differences, so if an agency tries selling private duty
services with language like we’re Medicare certified it is not true of the services you are seeking. Often agencies that offer both Medicare certified home health and noncertified private duty homecare are run as if they are distinctly separate companies with their own office staff, even if its overseen by the same director or administrator under the same ownership umbrella. The biggest challenge with private duty homecare across the nation is the lack of consistency in regulations, standards, requirements, training, pricing, and the services offered, so it’s very important to be very diligent in checking out any agency you are considering for services. Choosing to hire individuals outside of an agency is not recommended because there are no protections for the senior and family.
SAFETY CHECK: It’s not unusual for individuals who have criminal backgrounds or who have been fired from agencies to post ads in the local paper or on websites like Craig’s List to obtain work. Only consider hiring someone that comes highly recommended from a trusted source who has used their services in the recent past. It is highly recommended to request or obtain a county and state criminal background check, check employment references, interview the person at length, and require that they hold liability and bonding insurance that you also check with the insurance company. Consult an accountant, labor lawyer or elder care lawyer about employment taxes so you don’t find yourself liable with the IRS and state treasury for not taking and paying taxes from their employment with you. Long-term care (LTC) insurance companies have been difficult to deal with in recent years because their policies state that the home care agency must be licensed or Medicare certified. LTC insurance companies are beginning to understand that licensing varies by State, and Medicare doesn’t certify nonmedical care, so they have been quicker to pay claims they tried to deny in the past. If you are struggling with getting benefits paid due to the inappropriate language of the policy seek help from an agency that is familiar with your particular insurance company or is experienced at getting denials reversed. Pull your state’s specific requirements or lack thereof from your state website to help educate your insurance company on the specifics of your state as it relates to nonmedical homecare may be very helpful in getting benefits paid. If you considering a long-term care insurance policy read every single word and do some investigating into the company’s history and consumer-satisfaction rating.
RESOURCES: Home Care Association of AmericaPrivate Duty Homecare AssociationAccreditation Comm The Academy for Private Duty Home Care
Angil Tarach-Ritchey RN, GCM is a nationally known eldercare and aging expert and the best-selling and awardwinning author of Behind the Old Face: Aging in America and the Coming Elder Boom. Angil has over 30 years experience in geriatric care and advocacy. She is available for speaking engagements and consulting for families and professionals. You can reach her through her website http://www.elderboom.org Stayed tuned for Part 3 Assisted Living
Magazine/January, 2012
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Health Literacy is the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Limited health literacy is associated with poorer health outcomes and higher health care costs. Limited health literacy affects people’s ability to: Search for and use health information, Adopt healthy behaviors. Act on important public health alerts.
The Impact! Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in health care facilities, retail outlets, media, and communities
The Campaign!
On October 1st, CareNovate Magazine team launched their very first campaign via social media, asking health care experts, educates and patients :How can we improve Health Literacy" The GOAL: To curate 100 TIPS. See the next page for some of the tips shared via Linkedin.
According to the National Library of Medicine, Health Literacy is defined in the Institute of Medicine report, Health Literacy: A Prescription to End Confusion, as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." Health literacy is not simply the ability to read. It requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations. For example, it includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor's directions and consent forms, and the ability to negotiate complex health care systems.
Check out our expert interview with Ms Helen Osborne, founder of Health Literacy Month on page 48 Magazine/January, 2012
7
CareNovate Magazine Social Media Campaign. Complete the sentence below...
"We ______________________________ can improve health literacy by" see some of the response below
"Using more online videos to educate patients about diseases, conditions, treatments, aftercare, etc." Ron " Adopting 3-5 key plain language messages about safe care. [ex: Ask Questions, Expect Answers You Can Understand, Make a list of all your medicines etc" Lisa "...Writing in a way that ordinary people / patients understand and forgetting FDA guidelines. " Ian
people to access health in a more empowered way. Facilitating, giving information, allowing choice, time, listening, supporting and encouraging" Linda "Speaking to adult social and service groups, church groups, presenting at conferences in related disciplines, giving interviews to television programs and news outlets, raising the subject in non-professional conversations, speaking to, emailing, and letter-writing to politicians........taking every opportunity to inform, educate, and advocate." Sharma
"... Using pictures. " Paul
"I've noticed quite a few recent blogs attempting to reduce major problems to single points. I prefer to say that we can BEGIN TO improve health literacy by "Finding universal symbols that can provide FIRST creating a relationship between the easy to understand information. A stop sign clinician and patient based on clinician is the same anywhere in the world, we just curiosity about the patient as a unique need to develop communications that thinks human being bearing an illness or injury, globally." and on the patient's trust in the clinician Donney beyond the clinician's technical skills" Kathy "We can improve Health literacy by enabling
To see the growing number of responses, tips, please visit www.carenovatemag.com or click on th 17 Magazine/January, 2012
B ookS List
There's nothing a great book. Here, we share 4 fantastic ones. Hope they help as you journey in health, wellness & caregiving. Email us the ones that made a major difference. Email us: info@carenovate.com
The Honest Toddler is written "under the supervision" of Bunmi Laditan. Mom of 3 is the creator of the Honest Toddler and the The Honest Toddler - A Child's guide to parenting. It provides humorous insight through quips from a child's perspective. Featured in Good Morning America, Canada AM, CNBC. Her significant online following that resulted in a book deal and optioned TV series by Hollywood producer Darren Star (producer of Sex & The City). Book is available through Amazon
club BookS
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Award-winning journalist Katy Butler ponders her parents’ desires for “Good Deaths” and the forces within medicine that stood in the way. Caring for declining parents is a reality facing millions who may someday tell a doctor an oddly loving thing: “Let my parent go.” This revolutionary blend of memoir and investigative reporting points the way to a new art of dying for our biotechnical age. Book is available through Amazon
The Silver Lining is part memoir, part guidebook that combines the author’s professional knowledge with her firsthand personal experience. Hollye Jacobs—a palliative care nurse with graduate degrees in social work, bioethics, and child development & award-winning photographer Elizabeth Messina, Jacobs offers an informative, therapeutic guide for people who have been diagnosed with the disease. Book is available through Amazon
The Good Nurse is a true story of medicine, nursing, madness, and murder. Gripping and brilliantly written by Charles Graeber. CNN called it "alarming." Charles Graeber is an award winning journalist . A True Story of Medicine, Madness, and Murder Book is available through Amazon
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Coming Up Soon Another Exciting Issue #3
CareNovate Magazine Now Booking Ads for 2014 Info@carenovate.comMedia Kit
t
Being the Nurse at home When Fami B Y
ly Caregive Healthcarres Become Workers
M I C H E L L E
Rising senior care facility costs.
Increased longevity.
Decreased availability of financial resources, both public and private, to pay for specialized care for a longer period of time. For these and other related reasons, many of today’s seniors stay home, even with complex care needs, and family members are finding themselves wearing the hats of nurses, doctors, nutritionists, and other specialized healthcare workers normally found within the walls of a nursing home. Released in October 2012, an AARP Public Policy Institute report called Home Alone: Family Caregivers Providing Complex Chronic Care indicated that
S E I T Z E R
- 46 percent of family caregivers surveyed were performing medical/nursing tasks for individuals with “multiple chronic physical and cognitive conditions; - 78 percent were managing multiple medications for those in their care; 35 percent provided wound care; and - 53 percent served as care coordinators.
From preparing food for individuals on special diets to administering IV fluids to managing incontinence and more, today’s at home caregivers are doing it all -and with little to no support or training.
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If you are one of these dedicated caregivers, consider these tips for managing medical care more efficiently and learn how to access the support and help that may be available to you:
Educate
Check with your local Area Agency on Aging (via the Eldercare Locator’s Caregiver page) to learn about training opportunities for family caregivers; some may be available online as well. Learning more about the tasks you’re performing may alleviate some of the stress, anxiety, and pressure you’re feeling (the AARP report revealed that many family caregivers worry about making mistakes), and will ultimately make you a better caregiver.
Delegate
Reach out to other family members who may have medical knowledge/training and ask for their help. If you’re part of a church congregation, talk to people who work in healthcare to get their advice or assistance. Find out if students from a local university’s nursing or pre-med program are interested in providing care, paid or unpaid, for a few hours a week.
Evaluate
Take a close look at the time, energy, and resources you’re spending in providing this complex care (and at what expense -- not just in terms of money), and consider whether it’s truly a beneficial arrangement for all involved. That doesn’t mean a nursing home placement is your only choice and next step; home care is a very flexible option, with medical and non-medical care providers ready to serve.
Investigate
Eventually, families may still need to discuss the possibility of assisted living or home care, as there may come a time when the family caregiver will either need respite -- some communities offer short-term stays, and home care hours can be tailored to your family’s needs -- or to “retire” from the role of medical care provider altogether.
Michelle Seitzer spent 10 years filling various roles at assisted living communities in Pennsylvania and Maryland, then worked as a public policy coordinator for the PA Alzheimer’s Association before settling down as a full-time freelance writer. Seitzer also served as a long-distance caregiver for her beloved grandfather, who died of complications from Alzheimer’s in 2009. She has blogged for SeniorsforLiving.com, which provides information on assisted living, home care, and Alzheimer’s care, since November 2008, and is the co-moderator of the first #ElderCareChat on Twitter, held on the 1st and 3rd Wednesday of each month at 1 p.m. EST. Follow her on Twitter and Facebook.
& MORE ONLINE! Find more tips, insights and resources at carenovatemag.com
Over The Counter (OTC) Medication Tip: Cold Medicine in kids Even with FDA warning, dosing of cough/cold meds in children persist
KEY POINT The majority of caregivers with children under age 6 presenting to an emergency department (ED) for treatment of cough/cold symptoms were unable to appropriately select and dose an OTC cough/cold product for their child in a recent study. Most caregivers were unaware of potential adverse effects, drug interactions, and recent warnings with these agents SOURCES
Lazarus SG et al. Cold preparation use in young children after FDA warnings: do concerns still exist? Clin Pediatr. 2013;52:534–9. Magazine/2013 Issue 2
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When The
Doctor
Becomes
A
Breast Cancer
Patient
Dr Gia Siason
By
Breast Cancer Survivor, Patient Care Advocate, Blogger, Writer
I begin my musings on Life 101 by stating that I am a proud
Breast Cancer survivor having recently graduated from chemotherapy August 6, 2013.
I share the following ultra random thoughts and learnings I have had after my diagnosis, which I hope, will be of help to all women and caregivers. When I was a child I was always amazed on how Buddha looked. I love Buddha's "look"- fat, jolly and peaceful. I love Buddha's "outlook" - positive and practical. Most of the notes I have jotted down below were inspired by Buddha, simply because I am an avid fan of optimism believing always in better days no matter how dark its precedence may be.
2 Magazine/January, 2012
1. Life will be a reflection of what you expect out of it. Think negative and your life will just be negative. The opposite of positivity.
9. Do not stress on the small stuff. What is small stuff? You and only you can define it. 10. Personality can be modified. Character is indelible. You will know the difference when you are at the lowest point in your life.
2. You attract what you want. Thus, if you truly WANT something and/or someone, claim it upon 11. yourself that you already have it and Peace is not the absence of noise. it truly will. Not immediate though It is when you can keep still despite but trust that it will. the turmoils in life. 3. Always say "thank you" to circumstances and people. Be generous in gratitude, after all we will not be the way we are now if not because of what these circumstances and people have taught us- good or bad, there is ALWAYS a lesson. 4. Be generous with praise. It will not cost you a single cent. 5. Be silent when rendering service to others, you will be rewarded a trillion-fold. In every good deed you do to others just remember that we are just paying it forward to the God we believe in who is all GOOD. 6. Trust in the power of the universe giving you what is meant for you.
12. There is always something good in all of us. So never judge, unless you feel you are perfect. 13. Spend time with people who matter in your life. 15 minutes in a 24-hour period is not much. It is the quality of the companionship that matters. 14. Always be open to new possibilities. Remember that destiny finds a way to turn things around to lead you to where, who and what is meant for you. Never compare the past with what the present gives you. After all you might just be facing your destiny in your face. Take the chance. Life and love is all about taking risks. The best things in life happen unexpectedly. Enjoy it.
7. Never burn your bridges. It is indeed a small world after all.
15. Health is wealth. We were blessed with the body and looks that we have now. No return, no exchange so learn 8. to deal with it and take care of it. Stay grounded. The more you stay Confidence is the key. Beauty is grounded the more you will be lifted again defined by you. No accurate up. definition.
Magazine/January, 2012
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16. There are no mistakes in life ONLY lessons. A lesson will be repeated all over again and until we have learned from it we will never "advance" to the next step. 17. Express your feelings freely and openly. We only have one life to live so give it your best shot. The more we avoid and run away from how we truly feel the more it will catch up on you. 18. Live your life to EXPRESS and not to IMPRESS. Work for a CAUSE and not for APPLAUSE. You will be more blessed. 19. Life is an echo. It always gets back to you. We get what we give. 20. We are all worthy to be loved, to be happy and to have the best this world can and will offer. 21. In whatever you do passion will differentiate you with those who are determined. Determination drives you but it is passion that sustains you. 22. No time is ever too late or too early. In all things you do, the NOW is what matters. 23. Learn to forgive. It will release us from the experience and allow us to move forward.
Find Dr. Gia Sison via Twitter @giasison She is a Thomasian Filipino Doctor. She is a blogger, a top Kred 1% influencer.
She is Breast Cancer Survivor/Advocate. She is a active contributor to health care Twitter communities such as #bcsm 24. #CPHC #hcsm #hcsmanz #hcldr Life is meant to be lived forward, never #meded #hchlitss backward. Growth is inevitable. Never 路 look back. Focus on the fact that the best Her Blog is Sand and Stone is always meant to come. Medical thoughts on life, love and happiness giasison.blogspot.com
)()()()()()()()(
#MedSafety Corner
Be Medicine Smart
October 2013 is NCPIE’s 28th annual “Talk About Prescriptions” Month (“TAP” Month). The theme for this year’s TAP” Month is “Be Medicine Smart.” The focus for “TAP” Month 2013 improving medication adherence is a core value of medication safety and appropriate medicine use. To learn more visit National Council on Patient Information and Education (NCPIE) www.talkaboutrx.org
Acetaminophen is an ingredient found in more than 600 different prescription and over-the-counter medicines, including pain relievers, fever reducers, and sleep aids as well as cough, cold, and allergy medicines.When used as directed, it is safe and effective. But taking more than directed is an overdose and can lead to liver damage. Learn more about taking acetaminophen safely.
WATCH THE VIDEO
There are only
4
kinds of people in this world
New Update on Gluten Food Labeling Until now, there was no legal definition or federal standards for the food industry to use in labeling products "gluten-free." In August 2013, the Food and Drug Administration (FDA) issued a final rule that defines any food label as "gluten- free." This means that patients, caregivers with celiac disease can now have confidence in the meaning of a "gluten-free", "without gluten,", "free of gluten," and "no gluten" label on foods. Under the FDA rule, to use the claim "gluten-free," means a gluten limit of less than 20 ppm (parts per million) in foods that carry this label. This is the lowest level or amounts that can be consistently detected in foods using valid scientific analytical tools. 20 ppm (parts per million) is consistent with food standards set by other countries. An estimated 5 percent of foods currently labeled "gluten-free" contain 20 ppm or more of gluten.
Those who have been caregivers;
Those who currently are caregivers;
Those who will be caregivers; Those who will need caregivers.
Rosalynn Carter Former First Lady of the United States
Key Things About Celiac Disease
• Gluten means the proteins that occur naturally in wheat, rye, barley, and crossbreeds of these grains. • 3 million people in the United States have celiac disease • It occurs when the body's natural defense system reacts to gluten by attacking the lining of the small intestine. • Without a healthy intestinal lining, the body cannot absorb the nutrients it needs. • There is no cure for celiac disease • Avoiding gluten is the only way to manage the disease To learn more, visit the FDA website.
Introducing
Michael Walsh He’s the co-founder and CEO of Cariloop, founder of the chapter of Health 2.0 in Dallas, a National Academy of Sports Medicine (NASM) certified trainer. As an entrepreneur, he is passionate about helping other entrepreneurs, which lead him to create HealthSparx - a podcast, blog, where showcase the brightest entrepreneurs and innovations in health and technology. When I got the opportunity to chat with him, I took it. Check out our conversation as he takes us behind the scene... By G.Erowele Photos: MW
Kayak for the Geriatric Care Industry 29 Magazine/2013 Issue
caregivers have to think about themselves CNM: We are always interested in seeking and their own wellbeing too! out new caregiving solutions for Cariloop makes things much easier for these caregivers and families. Talk to us, walk us caregivers by giving them a place to finally through the process – What is Cariloop? understand nearby options that can help their situation. In just a few clicks, they can MW: Cariloop empowers seniors and their find a variety of providers nearby including families to easily access key information assisted living, home care agencies or adult about geriatric care providers. Think of it as day centers that fit their unique situation. "Expedia for senior care" - if your mom or Our search engine makes it easy to narrow grandmother suddenly falls or develops Alzheimer’s disease and needs a higher level down those options so these people aren’t overwhelmed. Our belief is that caregivers of care, Cariloop helps you understand nearby provider options, availability, pricing, don’t want to see a list of 200 providers, they want to see the best 5 and connect right then and services and connect with them and there. immediately.Our platform launched live to the state of Texas back in April, 2013. CNM: What does it do? How can Cariloop help a caregiver, senior or sandwich generation caregiver? MW: We help care for caregivers. Caregivers have one of the toughest jobs in the world – managing someone else’s life and health while trying to still manage their own with the same detail and precision as normal. It’s exhausting. It’s important to delegate sometimes. Yes, they are your loved one, but
CNM: What is the cost to caregiver or senior care providers? MW: Seniors and caregivers have no financial obligation whatsoever. The providers pay for the use of our system to generate new relationships with needing the care. Providers can then pay per lead or opt for a monthly subscription.
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CNM: Have current Cariloop users reported any challenges using the service and how are you addressing them? MW: Of course, there are always challenges when introducing a new service to the market. At this point, the providers are getting more and more accustomed to sharing information about themselves, something they don’t do much of in the digital realm. We’ve addressed a lot of this by cutting many of the steps out to save them time. They won’t use it if it’s too tough to figure out or takes too much time to manage. For the caregiving community, we’ve gotten a lot of good feedback about our search feature and that there are too many options there. We’re working on simplifying that in the next month or so. healthcare tech is booming right now. The senior care industry is particularly ripe for innovation and change, which has sparked this huge push for new products and MW: There is indeed. We services. However, many of encourage our families to these companies launching review and comment about their experience with Cariloop are just marketing themselves as tools for stakeholders to providers. We also expect that use. providers respond when appropriate. We all make This is where Cariloop is buying decisions based on different. During our time referrals or the feedback of here in the Health Wildcatters others, and healthcare is no Accelerator, we’ve come to different. understand who we want to be and how we can make a All reviews are checked by huge impression on the our team to make sure there market. isn’t any patient sensitive We see ourselves as a information or profanity company that works hard to before they get posted, but improve a very broken other then that, it’s an open process – making better forum for discussion! decisions about people’s long Transparency is key to our term care plans. We just success. happen to have great tools and technology that go with CNM: There has been a huge it. leap forward in mobile medical technology & digital CNM: What role(s) do you health. Where do you see foresee Cariloop playing in Cariloop in this space? the Healthcare reform and ACOs? MW: Great question! Yes, CNM: Is there a review system with Cariloop? If so, how simple is it? Who vets the reviews?
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MW: I’m willing to bet that even most of the direct players in healthcare reform and ACOs still don’t know what their role is, and that’s because much is still evolving. In the same spirit of what the reform was meant to accomplish, we want to see our efforts result in better quality of care available and higher levels of patient satisfaction attained. How? By making it more transparent for all the people in the system. Patient (or “customer”) satisfaction starts at the very beginning, so if we can help make it simpler and faster for people to get the help they need, the market should see a higher level of satisfaction. If we’re successful in showcasing the best providers based on pure, unbiased data, then the quality of care should adjust to those standards set.
CNM: Where can caregivers and families and more Cariloop information? MW: People can come to our website at http://cariloop.com to learn more, check out all the great stuff in our blog, and try it out for Texas. We are also very active in the social media circles on Facebook and Twitter, so definitely follow us there. If there are ever any direct questions or concerns, I can be reached at mwalsh@cariloop.com.
Reach Michael
Cariloop - www.cariloop.com HealthSparx - www.healthsparx.com Health 2.0 Dallas - www.health20dallas.com Email - mwalsh@cariloop.com
Watch the Cariloop Commercial below
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Online Caregiving Support by
DENISE M. BROWN She launched Caregiving.com in 1996. She has authored several books to help family caregivers. Her insights about the caregiving experience have been featured in The Wall Street Journal, Time magazine and Chicago Tribune and on SmartMoney.com. She is also a professional caregiving coach, working with family caregivers and professionals. We caught up with her and glad we did .... Interview by G. Erowele
My goal is to connect family caregivers CNM: You published your very first caregivingand to provide tfind several ways to do publication in 1995. What was your motivation?that. Did have any experience as a caregiver then? CNM: You have established multiple avenues to DB: I had been working with family support family caregivers. What do you like caregivers since 1990 and wanted to most about your jobs? offer them a publication that felt like a support group which arrived in their DB: I like everything. I love to write, I love home. In my work, I saw that family to host video chats and podcasts, and I caregivers were isolated and lonely and love to connect family caregivers. I love felt I could help solve that problem with to try out new technology to see how we a monthly newsletter that featured tips can use it to create more meaningful from me and stories from family connections. I love to connect with caregivers. family caregivers when I give a workshop or keynote presentation. In particular, I CNM: Many might not know this but you love to listen to family caregivers share pioneered caregiving online support. You their stories. created and debuted Caregiving.com in 1996, which is one of first online support groups for CNM: You have multiple roles. You are very family caregivers. How has Caregiving.com busy. grown since then? What is a typical morning/day for you? How do you stay organized? DB: Since I launched CareGiving.com, the site has grown with the advances of DB: I have daily habits which help me technology. From the beginning, it was stay on top of maintaining very important to me that family CareGiving.com, social media, my video caregivers could connect with each other. chats and talk shows. I start working by Now, members of CareGiving.com can 7:30 a.m. and sometimes work until 9 connect through blogs, support groups, p.m., with breaks during the day to read podcasts and video chats. It's amazing to and take a walk. I like to walk at least me that, at no cost, we can air live three miles at least five times a week. I broadcasts on CareGiving.com through also schedule certain tasks to take place Google Hangouts. And, in those on certain days. For instance, I publish a broadcasts, visitors and members can Weekly Comfort on Mondays, a threewatch and listen to other family word prompt for our Community caregivers share their stories, worries, Caregiving Journal on Wednesdays and a struggles and successes. In the early weekly self-care plan on Thursdays. I also days, our connections consisted of simply delegate responsibilities to members of email messages. We could never see the site who volunteer. So, I have each other. It's awesome that now we can volunteers who help oversee our online interact live in a broadcast, as if we were support groups, edit our blog posts, had our own television show. maintain our Facebook fan page, sell I love that a family caregiver can join advertising space, and coordinate and CareGiving.com and within minutes edit our self-published books. publish a blog post, ask a question on the site, and share privately in a support group with other family caregivers. The ability to make meaningful connections with others who understand is the core of CareGiving.com.
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CNM: How do you stay healthy and share your top 1-2 tips with women and caregivers?
DB: I keep simple habits which become
second nature. I eat three meals and two snacks daily at about the same times. I like to include a fruit and/or vegetable in my snacks. I cut out soda and diet soda from my diet four years ago and have cut down on sugar, which has made a big difference for me. I also am aware of portion size, which also helps. I love to walk and ride my bike. This has been a busy summer for me so I haven't had a chance to ride my bike yet. I also think it's important to remove temptation and keeping healthy options in the house. My tips would be: Drink water throughout the day and do whatevery you can to get sleep.
CNM: Where do you go online for your health, wellness & medical information?
DB: I read The New York Times Health
section every day and MedPageToday.com several times a week.
CNM: What advice will you give
new caregiver, who happens to be sandwiched in care (aging parents and young children?
DB: I would suggest creating a schedule,
which incorporates caregiving responsibilities and appointments, kids' actitivities and appointments, and time for yourself and for your marriage.
DB: I really believe a schedule and routine
can help you manage the stress of trying to meet so many needs. I also think it's important to be flexible about your priorities, knowing that priorities may change daily and, sometimes, each minute. I also suggest the flexibility apply to spontaneity--it's hard to spontaneous during caregiving so when an abe opportunity to have fun happens do your best to make that (having fun) the priority. Be sure to schedule activities or events that you and family members look forward to, like Friday Night Pizza and Movie Nights. It's important that everyone has something to look forward to during the week. Finally, I'll share advice recently shared by one of my members, Sue, who cares for her daughter, her parents and works a full-time job. She makes sure she spends quality time with her daughter, her parents, her husband. She focuses on the moment and the person she's with, letting go of worrying about who she's not with. For Sue, it's about about the quality, rather than the quantity, of time together.
Magazine/January, 2012
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CNM: There has been a CNM: There has been a lot of attention & awareness brought to the caregiving experience here in the US and globally. What else can we, as a society do? DB: We can support family caregivers in each of our communities--the workplace, our hospitals, our doctor's offices, our houses of worship, our stores, any place people gather. Family caregivers are everywhere and yet still struggle to get what they need. We can coordinate support so that family caregivers can take regular breaks; can easily attend appointments, programs and services with their carees; and have flexibility to be with their carees during a health crisis without worrying about losing their jobs. CNM: Tell us one fun fact about Ms. Denise Brown? & What is next for Caregiving.com? DB: In 2007, I rode my bicycle 100 miles over two days, leaving downtown Chicago on a Friday morning and arriving 66 miles later that afternoon in the Indiana Dunes, and then continuing from there on Saturdy morning to Sawyer, Mich. I rode as a part of an organized bike ride for a local charity. I also have participated in 60-mile and 50-mile bike rides. I hope CareGiving.com grows to be the one-stop community for family caregivers that offers everything they need for their caregiving experience, including support, training and products.
lot of attention & awareness brought to the caregiving experience here in the US and globally. What else can we, as a society do?
DB: We can support family
caregivers in each of our communities--the workplace, our hospitals, our doctor's offices, our houses of worship, our stores, any place people gather. Family caregivers are everywhere and yet still struggle to get what they need. We can coordinate support so that family caregivers can take regular breaks; can easily attend appointments, programs and services with their carees; and have flexibility to be with their carees during a health crisis without worrying about losing their jobs.
CNM: Tell us
one fun fact about Ms. Denise Brown? & What is next for Caregiving.com?
DB: In 2007, I rode my bicycle
100 miles over two days, leaving downtown Chicago on a Friday morning and arriving 66 miles later that afternoon in the Indiana Dunes, and then continuing from there on Saturdy morning to Sawyer, Mich. I rode as a part of an organized bike ride for a local charity. I also have participated in 60-mile and 50-mile bike rides. I hope CareGiving.com grows to be the one-stop community for family caregivers
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Health Literacy Feature
Q &A With
Health Literacy Expert
HelenOsborne By G.Erowele In 1996, Helen Osborne , M.Ed., OTR/L founded and became the president of Health Literacy Consulting. As a health literacy advocate, she launched the Health Literacy Month, which so many of us celebrate every October of the year. She producer and host of the podcast series, Health Literacy Out Loud and recently authored Health Literacy From A to Z, Second Edition: Practical Ways to Communicate your Health Message.: In 2012, She became the recipient of the Neil Duanne Award of Distinction and the Will Solimene Award for Excellence in Medical Communication.
Helen rne Osbo
CNM: You are a national health literacy communi expert and probably know every single definition on the subject. As the Queen of this field, what is your own definition of health CNM:What role do you see health care literacy? providers and professional playing in improving low health literacy? HO: Health literacy is about mutual understanding. It happens when patients HO: Have you seen the IOM discussion (caregivers, the public, or anyone on the paper about 10 Attributes of Health receiving end of health communication) Literate Health Care Organizations? I and providers (clinicians, public health think it is a "game changer" in that the specialists, or anyone on the giving end of authors reframe the focus of health health information) truly understand one literacy from patients' skills (or lack another. thereof) to the alignment between the complexities and demands of health care systems with patients' needs and CNM: Can you share with us how you got into abilities. this field? What is your background? Health care providers and professionals can help in many ways, that include: HO: In 1995, I read my first-ever article about health literacy. It was published in 1) speaking, writing, and otherwise JAMA, by Williams et al. The article communicating in clear and simple essentially said that half, or more than half, ways, of the adults in this country struggle to understand written health information. I 2) consistently confirming looked at my patients, I looked at my understanding by using teach-back and patient education materials. It was user feedback, and immediately clear to me: Yes , there is a 3) developing teaching materials in problem. What can I do about it? So I soon collaboration with their patients or left my clinical practice and started my own other intended users. consulting business. Health literacy has been my primary focus ever since. CNM: Why is it so difficult for health care providers to adopt the use of plain language CNM: Social media is changing health care, with patients? businesses. It is also impacting how patients now communicates with their providers and HO: Health professionals spend many years search for health information online. What is learning the new language of medicine. It's your take on this issue? hard to learn again the importance of using lay terminology when communicating w HO: I am a big believer that we need to patients, their families, and the public. And communicate in all the ways that work. even harder to do so in a way that is That includes using technology, the engaging as well as understandable. I often internet, and of course social media. teach plain language workshops and refer From my travels in developing nations, to it as both a science and an art. it seems that mobile phones are increasingly a way for people to 8 Magazine/January, 2012
""I created this annual event as a way advocates everywhere could raise awareness with a louder, collective voice. Health Literacy Month has been going strong ever since with hundreds, if not thousands, of awareness-raising events taking place around the world."" CNM: You have authored several award winning books. Your latest awardwinning book “Health Literacy from A to Z: Practical Ways to Communicate Your Health Message� is no exception. Who would you say will benefit the most from this gem? HO: I wrote this book for readers like me -- busy health professionals who need to quickly figure out how to communicate clearly with patients they are about to treat. By the many positive comments, reviews, and awards, I have learned that my book is also meaningful and relevant to an even larger audience including those in public health, teachers and students, physicians, health educators, medical writers, and the general public.
CNM: You founded Health Literacy Month in 1999, which happens every
October. What motivated this endeavor and what is the theme this year? HO: It may be hard to fathom now, but years ago few people had ever heard the term "health literacy" much less had any idea why it mattered or what to do. I created this annual event as a way advocates everywhere could raise awareness with a louder, collective voice. Health Literacy Month has been going strong ever since with hundreds, if not thousands, of awarenessraising events taking place around the world. The theme for Health Literacy Month 2013 is "Be a Health Literacy Hero." It's meant as a way to inspire individuals, teams, and organizations to not only raise awareness but also take action.
CNM: You are the President of Health Literacy Consulting, which started in 1996. You have worked with many organizations.
How do you work with organizations? HO: The focus of my work is helping professionals communicate health information in ways that patients, caregivers, and the public can understand. One way I do this is through speaking and training, giving keynotes and leading workshops at conferences, association meetings, and within organizations. Another way is by serving as a plain language writer/editor on a wide variety of health-related printed and web materials. And of course, there are my Health Literacy Out Loud podcast interviews along with a monthly e-newsletter. Plus my book. And Health Literacy Month, too. This critical time of change, the lay public needs to know more than ever about how to access and use the healthcare system. And what to do when sick and how to stay well. Health literacy is essential throughout the continuum of care. Magazine/2013 Issue #2
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5
CNM: Where do you see Health Literacy heading as the US health care system changes?
5 Ways Social Media has
HO: At this critical time of change, the lay public needs to know more than ever about how to access and use the healthcare system. And what to do when sick and how to stay well. Health literacy is essential throughout the continuum of care.
1 YouTube traffic to hospital sites has increased 119% year-over-year. (source: Google’s Think Insights)
CNM: What’s next for Ms Osborne? HO: This is a question I think about a lot. I continually look at the everchanging field of health literacy in terms of what is needed, wanted, and how I can help. I also reflect on what keeps me challenged and enthused. For now, that includes traveling (including speaking internationally), interviewing (for podcasts, videos, and onstage as part of my presentations). It also includes tending to the other part of my life by spending time with family and friends and enjoying hobbies that including walking, playing bridge, reading, and flame-working with glass.
Health Literacy RESOURCES: To learn more, please visit the other pages of this Health Literacy Consulting website. You also can email Helen Osborne at Helen@healthliteracy.com or call 508-653-1199.
43 Magazine/2013 Issue #2
Impacted Health Care
Way Socia Med has Impact Healt Car
2 60% of doctors say social media improves the quality of care delivered to patients. (source: Demi & Cooper Advertising and DC Interactive Group)
3 Parents are more likely to seek medical answers online, 22% use Facebook and 20% use YouTube. Of non-parents, 14% use Facebook and 12% use YouTube to search for health care related topics. (source: Mashable) 4 The most accessed online resources for health related information are: 56% searched WebMD, 31% on Wikipedia, 29% on health magazine websites, 17% used Facebook, 15% used YouTube, 13% used a blog or multiple blogs, 12% used patient communities, 6% used Twitter and 27% used none of the above. (source: Mashable) 5 30% of adults are likely to share information about their health on social media sites with other patients, 47% with doctors, 43% with hospitals, 38% with a health insurance company and 32% with a drug company. (source: Fluency Media)
By G.Erowele Photo Provided by JA
S he is an author and national speaker that usually focuses on difficult subjects such as cancer and caregiving. She’s also a cancer widow who knows the challenges of being single as a mature adult as do the millions of singles over the age of 50 that are left alone every year by either divorce or death of a spouse. Joni Aldrich was raised in a home where the words “I can’t” were never used in a sentence, so she learned from a young age the tools and tenacity required to persevere throughout life’s challenges.
Joni Aldrich
She has published six books designed to help readers survive cancer, caregiving, brain illness, and grief. We thank her for allowing us in...
Caregiver
Real Life
To Husband & Mum.
CNM: You have managed million dollar businesses. You cared for your Husband and Mom, both died of cancer. How prepared were you to provide care and how did caregiving change your life? JA: Well, that is somewhat of a "trick" question, but a good one. The trick is that I don't think that anyone in any walk of life--even a seasoned medical professional--can be adequately prepared for providing care. The following work values in my career helped me to be a caregiver: 1.Attention to details. One of my favorite sayings has always been "the devil's in the details". Caregivers are often put into situations that they are poorly trained for, yet they have the patient's life in their hands. It is a heavy responsibility. Talk about details! 2.Tenacity. One of my friends who had been a bulldog during her husband's stage IV lymphoma battle (she was ferocious--he survived!) told me this: "Above all else, you have to get Gordon to eat." Gordon had always been somewhat overweight, so "forcing" him to eat proved to be a battle that I couldn't afford to lose. Tenacity means that you must store and use every tool in your toolbox to achieve your goal. 3.The ability to juggle priorities. Imagine getting your husband through three outpatient stem cell transplants alive, even while you're 800 miles away from your home, family, work and support structure. Add to that working full time remotely. No one else was trained to do my job. Every workday started at 6:00 a.m. or earlier, and then shifted gears mid-morning to feed, dress and get Gordon to the hospital every day (even weekends). The next 5-8 hours were spent in the cancer center with one eye and ear open to what was being done to Gordon--or both, depending on the situation--and a laptop perched on my lap.
Throughout that whirlwind existence (which I refer to in The Saving of Gordon as "the eye of the hurricane"), I sometimes felt like I wasn't keeping all of those balls juggling in the air efficiently, especially when my mental and emotional stability wasn't what it should be. That's really tough to admit when you're used to giving 125%, and your husband's life is at stake. Above all else, I knew that caregiving was my number one priority; it was the one thing that COULD NOT fail. There were many priorities, but Gordon was the only one that mattered. 4.No two situations are alike. When my mother was diagnosed with stage IV lung cancer, I thought: "Oh no, here we go again." However, that is also when I learned that no two caring situations are alike. Even though the "monster in the closet" was the same, the difference between caregiving for a 43-year-old husband and an 83-yearold mother was unbelievable. My husband was a willing patient, determined to do anything to live. My mother hated the fact that--because of her diagnosis--her youngest daughter was once again caring for a cancer patient. She knew from the moment of diagnosis that her time was limited. My promise to Mother was that I would keep her comfortable and give her the best quality-of-life that I could. In order to do that, however, my care for mother took on a different methodology. Don't assume that every care receiver is going to work with you. Find the approach that works for both of you, then refine the process as priorities change--which may be daily.
Job Description of a Cancer Caregiver BY
JONI ADRICH:
Able to multitask many health-related jobs without any practical training or experience. Able to read and understand medical jargon without any practical training or experience. Able to translate medical treatments to the patient so that he or she can understand what is being done to them. Able to spend long periods of time with a patient who is not patient and has a tendency to resemble most of the seven dwarfs—Grumpy, Dopey, Sleepy, and Sneezy. Able to juggle many prescription drugs without overdosing the patient. Scheduling experience is preferred; ability to get the patient to fifty doctor appointments in ten days. Able to perform under pressure, change priorities upon a moment’s notice, and call 9-1-1 if necessary. Must not faint at the sight of blood. Light cooking is required, but the job may necessitate force-feeding the patient. Should be able to maintain a germ-free work environment even with kids and pets. When you wake up every day, expect the unexpected and be prepared to act. Job requires long hours, but includes much appreciation from the patient. There is no pay, but the benefits are life-changing.
force behind it?
CNM: How did caregiving change your life?
JA: Caregiving is a gift that you give to
someone you love--even though you may not have ever expected to give that gift. With both cancer and caregiving, you learn that day-to-day small problems are insignificant. It's the big problems that are difficult to live through. On the nights that I stayed with my mother, I suffered the worst kind of torture. It still haunts me today--I want to ask every smoker, WHY? As I lay in the next room with much more than sleeping on my mind, I could hear my mother fight for every breath and cry out for help, even though she was sound asleep. There was nothing that I could do except adjust her medications and pray. God granted my prayer in a most unusual way. While my own nightly torture continued, every morning my mother wouldn't remember a thing. That was a huge miracle. Caregiving for Gordon and Mother taught me a lot about my own humanity. No matter how hard you try, you will make mistakes. The Serenity Prayer kept me grounded: Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. After the caregiving is over (which I call "empty nesting"), you can't dwell on the negatives. That's why each one of my books has a chapter called "If Only". You have to allow the wounds to heal before you can focus on the scars. The scars will fade over time.
CNM: You are the co-owner and producer of W4CS.com the Cancer Support Network. When did you start and what was the driving
8 Magazine/January, 2012
JA: I've always loved radio. I had been producing my own radio shows (M-F 2:00 p.m. ET Cancer SOS, Diagnosis SOS, Caregiving SOS, Treatment SOS, and Ladies Who Inspire) five days a week for six months, when the owner of the network approached me about an all cancer network. I told him "no". Then, I started to think about all of the amazing shows that I'd already produced on so many critical topics! Cancer isn't a simple disease--we all know that. What struck me from my programs, however, was that cancer is now about treating the "whole" patient, along with supporting their caregiver and family. I changed my mind, and www.W4CS.com became reality mid-year 2012. We're just a newborn, but one with lots of heart and hope. CNM: You have multiple roles, very busy. What is a typical morning/day for you? How do you stay organized? JA: As a one-woman operation, I wear a lot of hats. Most of my day is spent in front of a computer--not very exciting, right? Until you realize that I have close to 10,000 connections in cancer and caregiving world. And, you'd be surprised how many hours it takes to book, promote and produce five radio shows a week! My goal is to make every single guest an awesome one; every single message a meaningful one. The shows are my number one priority. Organized? Sometimes, I just feel like I'm being pulled along by a flood. It must work, because I've never drowned!
CNM: You recently launched Basket of Care. How did you come up with the idea? JA: Several years ago, one of my dear friends was diagnosed with lung cancer. He had lost his job, and had no health insurance. Struggling is a mild word for what Mike was going through. As we talked, he asked me what types of things he needed at his house for his treatment. Although Mike didn't ask, the next week I started collecting all of those things. I boxed them up, and sent him what my Mom would have called a "care package" or Basket of Care (www.BasketofCare.com). When someone you know is diagnosed, you don't know what to do or how to help. Why not send them a basket of practical things that they can actually use, such as a warm shawl, thermometer, pill organizer, etc. My basket designer is a cancer survivor, who puts her heart and a personal note into every basket.
CNM: What do you like most about your jobs? JA: The people that I get to meet--those who have experienced tough times through cancer and caregiving have the most amazing souls. Along this journey, I've hugged so many survivors, touched so many co-survivors, and held so many hands as others have cried. On my radio show, I've interviewed hundreds of doctors, survivors, caregivers and cancer foundations. I learn daily of new hope through diagnostic procedures, complimentary methods, and treatments. I love it when I can "connect the dots" to find help for someone in need through charitable organizations, or finding the right cancer treatment facility. My new Tuesday show with Chris Jerry (www.emilyjerryfoundation.org) is called Advocacy Heals U. My work is not a job; it's my advocacy to support those who need
help--every single person that I can touch around the world. It has healed me.
CNM: How do you stay healthy and share your top 1-2 tips with women and caregivers? JA: I am a licensed Zumba instructor. For me, Zumba is for balance and to stay healthy. My first tip: no matter what your life holds (and in my work I have to dredge up a lot of painful emotions), you must have something to balance the "ying and yang". Take time for yourself. Find out what allows you the balance you need--especially while caregiving. The second tip: Listen intensely to the care receiver--whether the message is a verbal or non-verbal expressed need. Honor your loved one's personal choice on all decisions that may affect their future, even (especially) end-of-life decisions. Remember, if you interfere or force the issue, how will you live with a negative outcome? The only exception is if you suspect that the patient's thinking is compromised by either excessive medications or a brain illness. If this is a concern, you must step up with their best interest in mind. Be a tattle-tell only when there is a solid reason.
CNM: Where do you go online for your health, wellness & medical information? JA: Much of this comes from my shows or others on the network. When I'm asked to help others with cancer, the American Society of Clinical Oncologists (ASCO) is a great resource, along with the American Cancer Society. I particularly like being a member of selective Linked In groups, which often give the latest and greatest health information for patients and caregivers. Magazine/ 2012 Issue #2
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CareNovate
Magazine
Mission: To play a crucial role in
empowering caregivers, seniors/elders, sandwich generation families & women become their own health advocate & partner!
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8 Magazine/January, 2012
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