The stark reality is that more and more Americans each and every day find themselves taking on the role of caregiver for a family member. This can present immense physical and emotional challenges. The first steps suggested here can help you find some balance as you navigate your caregiver journey.
(BPT) - Caring for a loved one with a chronic illness is something millions of Americans do every day. Whether it is a parent, spouse, extended family member or friend, the stress of caring for another adult can take a toll.
"I have to do absolutely everything for her," explains Anthony Cowels, whose 71-year-old wife, Florence, was diagnosed with multiple sclerosis in 1986. As he watched her disease progress, his caregiver responsibilities grew. What's more, for some of the years Cowels also cared for his elderly parents, compounding his responsibilities.
"It has been a long journey of caregiving," says Cowels, 70. "I try not to let it overwhelm me. I always look for ways to do better." Cowels learned to care for both himself and his wife better through useful tools, education and friendship and by joining a caregiver support group. He says he can "interact with others who identify with my situation.”
Family caregiving: A growing trend
Cowels represents a growing number of Americans who care for older or aging loved ones. About 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities in 2017, notes the AARP report Valuing the Invaluable: 2019 Update. What's more, as the population ages, caregiving demands are increasing while the pool of potential caregivers is decreasing.
As the Valuing report states, "Americans will have more older relatives or close friends to potentially care for than children in about 15 years. The U.S. Census Bureau projects that, by the year 2035, adults ages 65 and older will outnumber children under the age of 18 for the first time in U.S. history. This fundamental demographic shift is the result of the aging of the U.S. population, increasing longevity, and a declining birth rate. "
Caring for yourself
In addition to helping with self-care activities like bathing, dressing and going to the bathroom, family caregivers today often perform complex medical tasks, including wound care, giving injections and handling medical equipment. The tasks that were once provided in hospitals and health care clinics are increasingly the responsibility of family and friends, who are often given little training or support.
While many family caregivers often report positive feelings in their role such as a sense of purpose or connection with their loved one, it often comes with feelings of being overwhelmed. Exhaustion, worry, loneliness and financial stress are common challenges caregivers face. If you also work a full-time job, it can be even more difficult to balance your needs and responsibilities.
While you may not achieve perfect balance, it is important to prioritize your physical and mental wellbeing, so you can be there for the person you care for. These first steps can help you find some balance as you navigate your caregiver journey:
It is important for family caregivers to stay mentally and physically healthy so they can provide the best care possible to the growing number of people who need support. For helpful tips and caregiver resources, visit www.aarp.org/caregiving.
A diagnosis like inflammatory bowel disease (IBD) means lifestyle changes throughout every aspect of life, including financially through direct costs of care as well as indirect costs like missed school or work. There are a number of resources like these that can help IBD patients manage the financial impact of the disease, many of which depend on the patient’s stage of life.
Managing the Cost of IBD
(Family Features) A diagnosis like inflammatory bowel disease (IBD) means lifestyle changes throughout every aspect of life, including financially. IBD has many direct costs of care, like clinic visits, radiology studies, procedures and costly medications. There are also indirect costs such as missed work or school.
There are a number of resources that can help IBD patients manage the financial impact of the disease, many of which depend on the patient’s stage of life. For example, young adults transitioning into the workforce and off their parents’ insurance may find their needs quite different from older adults who are approaching Medicare eligibility.
Evaluate your IBD needs and select an affordable insurance plan. When you turn 26, you age out of your parents’ health insurance plan. Your options may include enrolling in a plan sponsored by your employer or your spouse’s employer; purchasing a plan in the health insurance marketplace (you can enroll 60 days before you turn 26 and the timeframe ends 60 days after your birthday); purchasing insurance on the individual market; purchasing COBRA (a temporary health insurance plan that is extended under your parents’ plan for up to 18 months); or going on Medicaid, if you’re eligible.
To decide what’s right for your situation, start by listing your current health care providers and health services. Review the insurance plan you are considering and check whether your current providers, medications and hospital are covered in the plan, and whether they are considered in-network (more cost-efficient) or out-of-network (higher out-of-pocket costs).
You’ll want to weigh potential expenses, including the monthly premiums, deductibles, out-of-pocket maximums, copays and coinsurance, if applicable. Also be aware of the distinctions between medical and pharmacy coverage. This will give you a realistic picture of what you can expect to spend on a monthly and annual basis.
For assistance with your options, consider speaking with an insurance specialist or help center, such as the Crohn’s & Colitis Foundation’s IBD Help Center, which can help you review available plans and find one best suited for your needs.
Participate in a savings program. If you have the option of participating in a Health Savings or Flexible Spending Account, these personal savings programs can help pay your out-of-pocket costs. You contribute a certain amount of untaxed money to the account each year, which can be used toward expenses like prescriptions, deductibles, copayments and coinsurance.
Each program has distinct guidelines on factors, like payment and carrying over unused funds, so it’s important to do thorough research before selecting a plan.
Enroll in manufacturer assistance programs. Depending on your specific circumstances, you may be eligible for assistance from your prescription manufacturers or lab testing companies. In addition to drug copay discount programs and pharmaceutical financial assistance programs, you might be able to access help to offset the cost of certain procedures.
Your health care provider or pharmacist may have information on available programs, or you can visit manufacturer websites and other resources like crohnscolitisfoundation.org/managingcosts.
Investigate grants, foundations, and other assistance programs. Other types of financial assistance are also available. Pharmaceutical companies, the Patient Advocate Foundation, and several other foundations offer college scholarships to IBD patients.
Purchase coordinated or supplemental Medicare insurance. As you approach the age of 65, you enter an enrollment period (3 months prior and 3 months after your birthday) when you are eligible to apply for Medicare, a federal health insurance program. In addition to original Medicare, you have the option of purchasing additional insurance for added health care coverage and benefits, such as a Medicare Advantage Plan (Medicare Part C) or Medigap plan.
Enroll in federal and state savings programs. If you have or are eligible for Medicare Part A, and if you have limited income and resources, your state Medicaid program can help determine whether you qualify for one of the Medicare Savings Programs.
State Health Insurance Assistance Programs (sometimes referred to as SHIP programs) have different names in different states but all provide free one-on-one telephone counseling and advice services, personal face-to-face counseling sessions, public education programs and media presentations for assistance with Medicare programs (including Part D) and Medicaid.
If you have limited income and resources, you may qualify for help paying for prescription drugs. The Medicare Extra Help Program is for Medicare Part D recipients and recipients of both Medicare and Medicaid who have limited income and resources to help pay for prescription drugs.
Apply for financial aid through pharmaceutical companies. Another option, if you are eligible, is to enroll in financial assistance through the drug manufacturers. Funds are available from several manufacturers and non-profits to help patients cover copays and pay their out-of-pocket costs.
Pharmaceutical patient assistance programs are separate foundations set up by the drug manufacturers to provide financial assistance to people who cannot afford their medications. You need to demonstrate financial need when you apply for these programs.
While on private insurance, you may be able to use drug copay cards. The drug company will pay for a portion of the drug and the out-of-pocket cost to the patient is considerably lower. However, drug copay discount cards are generally no longer available to patients when they transition off private insurance onto Medicare.
Investigate grants, foundations and other assistance programs. Additional assistance may be available through other foundations. Find these and other resources to assist in planning your IBD medical expenses at crohnscolitisfoundation.org/managingcosts.
Lower Your Medical Costs
1. Compare prices and select in-network providers. Always ask if your labs and support team members (all providers, not just your gastroenterologist) are in network.
2. Not all pharmacies charge the same, so shop around. Online pharmacies can often be less expensive (for example, a 90-day supply can often be the same cost as a 30-day supply).
3. Check your bill. According to the Medical Billing Advocates of America, billing advocates and other health professionals estimate up to 80% of medical bills contain errors.
4. If insurance refuses to pay, talk to your healthcare provider about appealing the insurance company’s denial.
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation
Adults living with schizophrenia may experience a cyclical pattern with their schizophrenia treatment journey, consisting of beginning a new treatment which lessens their symptoms, followed by a lack of adherence with their treatment plan and missing doses and leading to worsening schizophrenia symptoms or a relapse. Finding the right treatment plan, often consisting of a combination of supportive therapies and medication, can help adults control their schizophrenia symptoms.
(BPT) - Schizophrenia is a complex and chronic brain disorder that can interrupt every aspect of an adult’s life. For adults living with serious mental illness, like Jason, the journey to finding the right treatment plan, including medication and supportive therapies, can take years. During that time, adults living with schizophrenia may experience multiple episodes, breakthrough symptoms or relapse. While it can be challenging for many individuals to remember to take their daily medication, it can be especially difficult for adults living with schizophrenia, who after missing doses of their treatment may increase their risk for breakthrough schizophrenia symptoms or relapse.
Jason was diagnosed with schizophrenia when he was in his mid-twenties. Following his diagnosis, Jason struggled for ten years to consistently follow his schizophrenia treatment plan.
“At the time, my schizophrenia hallucinations and delusions were full blown. I thought I had special powers — that when I made eye contact with people, I could talk to them. I thought most people were out to get me, including my parents,” Jason says. “When I was having a lot of challenges, it strained my relationship with my parents.”
Unfortunately, Jason’s story is not uncommon. Adults living with schizophrenia may experience a cyclical pattern with their schizophrenia treatment journey, consisting of beginning a new treatment which lessens their symptoms, followed by a lack of adherence with their treatment plan and missing doses and leading to worsening schizophrenia symptoms or a relapse. As a matter of fact, research has found that adults living with schizophrenia experience on average 9 relapses in less than 6 years. There are multiple factors that can increase the risk of an episode (breakthrough symptoms or relapse), including missing doses or stopping medication.
After trying numerous treatment options and being hospitalized multiple times due to his schizophrenia symptoms, Jason’s doctor talked to him and his parents about switching his medication to a once-monthly injection to limit worrying about missing doses and to help Jason better manage his schizophrenia. Together, they reviewed the potential benefits and side effects of treatment options.
After being treated with a once-monthly injection and participating in supportive therapies, Jason’s symptoms were more controlled.
“For me, it was important to get healthy, which included working with a psychologist and attending group therapy sessions early in my treatment journey, as well as taking my medication and exercising,” Jason said.
By finding a comprehensive treatment plan that worked for him, Jason was able to focus on other things like friends, family, and activities he enjoys like writing, kickboxing, and spending time with his nieces and nephews. “Most importantly,” he said, “I started working with those who were trying to help me. I began to see my parents as allies in my fight. Now I am closer to them than ever.”
Reflecting on his past experiences, Jason now wants to share his personal story to help other adults with schizophrenia navigate their own treatment journey.
“I didn’t ask for this, but I am dealing with it. I want to help other people. Don’t give up!”
If you or a loved one are an adult living with schizophrenia, ask your doctor if a change in your treatment plan could make the difference for you. Learn more at https://www.oncemonthlydifference.com.
Jason is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.
For a parent of a child diagnosed with a chronic illness like Crohn’s disease or ulcerative colitis, the future can be scary and overwhelming. Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient
Understanding Pediatric Chronic Illnesses
How families can manage inflammatory bowel diseases
(Family Features) For a parent of a child diagnosed with a chronic illness, the future can be scary and overwhelming. Assembling a medical team and beginning to formulate a treatment plan, even becoming familiar with a glossary of new terminology, can be taxing.
Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient. For example, the Crohn’s & Colitis Foundation is a leading resource for families navigating inflammatory bowel diseases like Crohn’s disease and ulcerative colitis.
What is IBD?
Crohn’s disease may occur in any part of the large intestine (also called the colon). In fact, it can happen anywhere in the entire digestive system. However, it most commonly develops right where the small and large intestine meet. In ulcerative colitis, only the colon and rectum are affected.
No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe several factors may lead to the development of the diseases, including genes, environmental elements like viruses and bacteria, and inappropriate immune reactions.
What are the symptoms?
“It is critical that if you suspect your child has inflammatory bowel disease, you seek care with a qualified pediatric gastroenterologist who can carefully and efficiently help determine the diagnosis and begin a treatment plan to help your child feel better, thrive, and maximize quality of life,” said Andrew Grossman, MD, pediatric gastroenterologist and chair of the pediatric affairs committee of the Crohn’s & Colitis Foundation.
How does it affect children?
They are often overwhelmed by the emotional and psychological side effects of the disease.
Learning how to manage the disease is not always easy for children. Parents play an important role in educating their children about IBD, including teaching them they need to take their health seriously and take responsibility for caring for themselves.
How can IBD be managed?
Maintaining your child’s health may also involve lifestyle accommodations, like organizing your schedule for ample bathroom breaks when away from home. You may also need to work closely with your child’s school to manage absences and academic performance along with any medical care that needs to take place during school hours.
Many families also find value in building a network of supportive friends and loved ones. One example, the Crohn’s & Colitis Foundation offers Camp Oasis – a co-ed residential camp program that allows children to meet others like them in a safe and enriching environment.
Another resource is justlikemeibd.org , a website featuring stories and videos from teens with IBD as well as information on school, dating, managing stress and diet, research updates, and resources for parents.
Is your child ready to manage his or her own care?
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation
Choosing a new doctor is an important decision that nearly everyone experiences at one time or another, whether it’s finding a new family physician or pediatrician after a move or searching for a specialist after being diagnosed with a condition such as heart disease, diabetes or cancer. This information can help you find the right physician for your and your family.
Choosing the Right Doctor for You and Your Family
(Family Features) What matters to you when finding a doctor to treat you or your family members?
A recent survey commissioned by the American Board of Medical Specialties found that four out of five people ranked Board Certification as an important factor when selecting a doctor, second only to whether the doctor is covered by their insurance.
Choosing a new doctor is an important decision that nearly everyone experiences at one time or another, whether it’s finding a new family physician or pediatrician after a move or searching for a specialist after being diagnosed with a condition such as heart disease, diabetes or cancer.
When selecting a physician, you want to know the doctor you choose is qualified and that you and your family will receive the best care. Board Certified doctors hold themselves to a higher standard and have demonstrated their knowledge and expertise in their specialty. This higher standard has been found to be important to patients.
“Choosing a doctor is one of the most important decisions you’ll make regarding your health,” said Richard E. Hawkins, MD, president and chief executive officer, American Board of Medical Specialties (ABMS), the leading not-for-profit organization overseeing physician certification in the United States. “Today’s patients have a greater expectation for quality. Board Certified physicians offer people confidence that their doctor has the specialized knowledge, skills and clinical judgment to provide the high-quality care they expect and deserve.”
What is Board Certification?
To find a Board Certified doctor near you, visit CertificationMatters.org.
Photos courtesy of Getty ImagesSOURCE:
American Board of Medical Specialties
A study funded by the National Institutes of Health is testing whether the nicotine patch can improve memory and functioning in people who have mild memory loss or Mild Cognitive Impairment (MCI).
Nicotine to Help Treat Memory Loss?
(Family Features) A study funded by the National Institutes of Health is testing whether the nicotine patch can improve memory and functioning in people who have mild memory loss or Mild Cognitive Impairment (MCI).
The largest and longest running study of its kind, the MIND (Memory Improvement through Nicotine Dosing) Study is looking for 300 volunteers at sites across the United States who have mild memory loss but are otherwise healthy, non-smokers over the age of 55.
“The MIND Study will provide valuable information for researchers with regard to early memory loss that is associated with normal aging and early Alzheimer’s disease, but we need volunteers if we are going to succeed,” said Dr. Paul Newhouse, MD, director of the Vanderbilt Center for Cognitive Medicine and lead investigator for the MIND Study.
According to the Alzheimer’s Association, approximately one in five people age 65 or older have mild memory loss or MCI and are more likely to develop Alzheimer’s disease or other dementias. Currently, there is no FDA-approved medication indicated to treat this condition; however, nicotine stimulates an area in the brain known to be important for thinking and memory, and scientists believe it could be an effective treatment for adults with MCI.
“People often think nicotine is addictive and harmful because it is in tobacco products, but it’s safe when used in patch form,” Newhouse said. “Nicotine is an inexpensive, readily available treatment that could have significant benefits for people experiencing mild memory impairment.”
The MIND Study needs 300 people to enroll in sites across the United States. Researchers are looking for healthy, non-smoking adults over the age of 55 who are in the earliest stages of memory loss to participate in the MIND Study.
Potential study volunteers can learn more by visiting MINDStudy.org or calling 1-866-MIND-150.
Photo courtesy of Getty ImagesSOURCE:
Memory Improvement through Nicotine Dosing (MIND)
There is little information available about epithelioid sarcoma. Patients, advocates, doctors and researchers across the United States are aiming to educate people about this ultra-rare cancer and the unmet need for an effective, tumor-specific treatment. Consider these facts about ES.
The Rarest of the Rare
What to know about a cancer you may not have heard of
(Family Features) A woman celebrating her 40th birthday, a young boy starting second grade or a college grad about to begin his career. All three could develop a rare form of cancer known as epithelioid sarcoma (ES), a form of soft-tissue sarcoma.
What are Soft-Tissue Sarcomas and What is Epithelioid Sarcoma?
How Rare is Rare?
According to the American Cancer Society, a rare cancer is defined as fewer than six new diagnoses per 100,000 people per year.
ES is an ultra-rare cancer. According to available epidemiology and case reports, it is estimated about 600 people are properly diagnosed in the U.S. and Europe each year.
What are the Most Common Types of ES and How Do They Impact Diagnosis?
Dealing with a Diagnosis?
For people faced with a sarcoma diagnosis, it’s important to get a second opinion from a sarcoma specialist. These specialists have extensive knowledge of STS and can determine what form of sarcoma one may have, what stage it is and the best course of treatment. The specialist may confirm the diagnosis with a physical examination, a scan or a tissue sample (biopsy) of the area.
It’s common to feel a range of emotions after a diagnosis of ES, according to Clear View Health Partners, including:
What Treatment Options are Available?
For patients with early stage ES, many elect to have surgery to remove the tumor, which may precede or be followed by radiation therapy or chemotherapy treatment, according to the Journal of Clinical and Aesthetic Dermatology. If the cancer returns or spreads, a patient may undergo radiation therapy and chemotherapy. New treatment options are being studied through clinical research, which is why seeking a specialist in the field is important if one is faced with a diagnosis.
As with many cancers, early detection is important and can increase survival or successful treatment. Typically, the distal form of ES is associated with more favorable survival rates than the proximal form.
4 Things to Do to Address ES Today
1. Don’t ignore your bumps and lumps, see a doctor as soon as possible.
2. Learn more about epithelioid sarcoma and its symptoms.
3. Seek a second opinion.
4. Find support if you’re faced with a diagnosis.
An ES Diagnosis Journey
In the spring of 2008, Maria Voermans’ 4-year-old daughter requested an “airplane ride,” and as Voermans lifted the young girl up with her legs, she had to make an “emergency landing” because of some sudden and significant pain in her upper right thigh.
After a few months, the pain persisted. Voermans continued to jog and play sand volleyball, thinking nothing of it. At the recommendation of her primary care physician, she took some anti-inflammatories and tried to rest, which wasn’t easy to do as a single mother of two young children.
Two more months went by and her leg caused increasing problems. She could feel something in her leg, but never considered it a “lump” because it was not visible on the outside. Voermans took matters into her own hands and visited a sports medicine orthopedic specialist for further testing.
An MRI found a mass in her right leg and she was referred to one of the few musculoskeletal oncologists in Wisconsin, her home state. He ordered a biopsy, which on Voermans’ youngest daughter’s third birthday confirmed her worst fear: it was a rare form of cancer called proximal-type epithelioid sarcoma, and it was stage three. Her biggest concern was not living to experience future holidays, birthdays, graduations and other life milestones with her daughters.
Voermans underwent chemotherapy, radiation therapy and had surgery to remove the tumor. As of July 2018, Voermans reports the cancer has not returned.
Today, she’s a wellness coordinator supporting other people diagnosed with cancer who are undergoing treatment or post-treatment. She’s able to use her own cancer journey to provide empathy to others, and it’s brought satisfaction to the whole experience.
Content courtesy of Epizyme, Inc.
Photo courtesy of Getty Images (Doctor talking to man)SOURCE:
(BPT) - In the winter, we tend to be in closer quarters indoors and constantly around friends and family. It is important to be conscious of infectious diseases, such as Methicillin-resistant Staphylococcus Aureus (MRSA), which are spreading rapidly among public places like gyms and schools. MRSA prevention should continue at home, especially for groups at higher risk, like student athletes.
Taking simple measures at home and on-the-go can help you to protect and safeguard your health, environment and family from dangerous bacteria and viruses, including MRSA, this season. Clorox teamed up with Jeanine Thomas, MRSA survivor and founder of MRSA Survivors Network; former NFL player Brandon Noble, who has been personally affected by MRSA; and Saskia V. Popescu, hospital epidemiologist and infection preventionist, to share the following expert tips:
1. Wash your hands frequently with soap and warm water for at least 15 seconds — the time it takes to sing "Happy Birthday" twice — or use an alcohol-based hand sanitizer. “Winter is a prime season for stomach bugs and diarrheal illness, so it’s important to stay vigilant with hand hygiene,” said Popescu. Be extra cautious in public settings like gyms, locker rooms, households and schools, where these viruses are increasingly spreading.
2. Keep to yourself and do not share personal items, such as towels or razors, which contact bare skin. MRSA is easily spread by skin-to-skin contact or touching contaminated items or surfaces. It is also resistant to many antibiotics, making it difficult to treat.
3. Act fast and take care of cuts and open wounds by covering them up with a clean, dry bandage until healed. Seek a medical professional if the wound worsens or doesn’t heal quickly. “When I contracted MRSA, it changed my life. I had no idea such a disease existed and would pose as a threat to my career, health and overall well-being,” said Noble.
4. Use a barrier, such as a towel or clothing, between skin and shared equipment at the gym. MRSA prevention should continue at home, especially for groups at higher risk like student athletes, as MRSA bacteria can remain on surfaces after someone touches them, making it possible for someone else to pick them up.
5. Regularly clean countertops and other surfaces in your home. “Keeping your germs at bay in the kitchen is easy,” said Thomas. “Just mix 1/2 cup bleach with one gallon of water, wipe surfaces and leave solution on for 5 minutes and then rinse.” The Centers for Disease Control and Prevention (CDC) recommends disinfecting surfaces which are likely to contact skin with an EPA-registered disinfectant, like Clorox Regular Bleach with Cloromax.
MRSA is one common superbug that can be potentially deadly. Caused by a type of staph bacteria often found on the skin and in the nose, MRSA is easily spread by skin-to-skin contact or touching contaminated items or surfaces. It is also resistant to many antibiotics, making it difficult to treat. The CDC estimates that there are 72,444 infections and 9,194 MRSA-related deaths each year in the U.S alone.
“In 2000, I had ankle surgery and ended up infected with the antibiotic-resistant bacteria MRSA. The infection spread to my bone marrow and bloodstream and required many surgeries and rehabilitation,” said Thomas. “Since then I have been dedicated to advocating for patients and families to help inform them and bring awareness of the disease and prevention measures to the general public.”
“I wish I had known the simple ways to prevent the spread of this disease, like I do now, as that could have made all the difference,” said Noble. As germs and illnesses spread quickly, especially in close-proximity areas, taking proactive steps to prevent common viruses and bacteria from spreading in the home, at schools and in locker rooms is more important than ever. Learn more on how to prevent the spread of viruses and bacteria, such as MRSA, at Clorox.com.
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