ProPublica has accumulated a wealth of data about how medicine is really practiced in the U.S. We’ve got millions of data points on things we believe everyone should know about his or her providers, like whether they’ve been barred from federal health care programs, their prescribing and treatment patterns, and how much money pharmaceutical companies pay… (more…)
“We all have this idea of an eldercare Shangri-La, where our parents can live and have their every need taken care of,” said the book’s author, Chris Cooper. “We all think that this care home will be funded by the government and that we will be relieved of heart-wrenching caregiver decisions.”
Unfortunately, that place doesn’t exist, Cooper said.
“It’s the Shady Acres myth, and even if it did exist, most Americans couldn’t afford it since the government doesn’t generally cover expenses for long-term care.”
That leaves caretakers and caregivers with the decision-making for their loved ones. Eldercare Confidential was written for those caregivers and caretakers—the adult children and spouses thrust into the role of fiduciary—or steward—for loved ones. The decisions they have to make can be stressful—even debilitating, said Cooper.
“That’s why I wrote Eldercare Confidential. There’s no other book like it on the market. It outlines the six major issues confronting these caregivers and caretakers—what I call the Six-Headed Eldercare Beast.”
Those potential pitfalls range from money, medical and psychological mistakes, to social, environmental and legal mistakes.
Cooper knows how vital this information is from experience. As a professional fiduciary licensed with California, he works with seniors, disabled individuals and others who can’t manage their affairs on their own. He has seen the sometimes disastrous mistakes that people have made because they weren’t prepared for their new role of taking care of Mom and Dad.
“Forewarned is forearmed,” Cooper said. “I’ve given straight talk and practical guidance to navigate those challenges.”
Cooper said his entire career has been about advocating for those who can’t help themselves. In addition to being a professional fiduciary, he founded Eldercare Advocates, which provides geriatric care management and long-term-care consulting, as well as Chris Cooper & Company, an independent, fee-only Registered Advisory firm based in San Diego and Toledo. He is enrolled to represent clients before the IRS and in fair hearing processes before the Department of Health and Human Services at the state level.
“In short, I help people who really need someone to stand by them and support them. That has been my responsibility—and pleasure—my entire career,” he said. “I’m proud that I get to continue this mission with my new book.”
Chris Cooper is a professional fiduciary licensed with California and a national certified guardian with the Center for Guardianship Certification. As a professional fiduciary, Chris works with seniors, disabled individuals and others who can’t manage their affairs on their own. He is the founder of Eldercare Advocates, which provides geriatric care management and long-term-care consulting. Chris has established the fee-only financial planning firm Chris Cooper & Company in Toledo, Ohio, and San Diego. He regularly appears on both local and national news shows and is quoted in newspapers and magazines nationwide. For additional information, please visit his website at chriscooper.com.
Why did we decide to become a family caregiver? Because we put our loved ones first and want the best for them. We want them to be happy and as healthy as possible. Part of our duty as caregivers requires the administering of medication. Adhering to a medication plan can be a challenging task for any individual, let alone caregivers, who hold a far greater responsibility.
According to a study by the World Health Organization 50% of all prescribed medications are either taken incorrectly or not at all. This can be fatal: In the US alone approximately 125,000 people die annually as a result of not following the doctor’s prescription.
This is a very frightening statistic.
Fortunately there is now a simple way to manage treatments and keep an overview of one’s progress: The MyTherapy app.
You might think: “Well, fine – another pill reminder.” but MyTherapy is much more than that. It unifies a person’s whole treatment in one application. The free app transforms a therapy into a to-do list which motivates people to complete it and fulfill their responsibilities. The app allows you to set reminders for medications, record measurements like blood pressure and even enter activities. Your smartphone will help you stay organized and on top of your responsibilities. But that’s not all.
MyTherapy also offers an integrated diary which is able to document all vitals. This is as useful for you and your loved ones as it is for the practitioners. With this tool your doctor will be able to easily identify health patterns and you will have a readily available overview of your progression. Before the next appointment, you can print out a personal health report to discuss. The well-structured report enables doctors to quickly identify and optimize a therapy plan for their patient.
There are two different ways that the use of MyTherapy can support you and your beloved one:
Only you as a caregiver use MyTherapy:
If you decide to become a “digital caregiver” with the support of MyTherapy you will benefit as the app simplifies your daily routine. The app enables you to easily make sure that your loved ones remember all their responsibilities. It will be easier to make sure they stick to the individual therapy plan, take their meds, work out and remember their measurements. This will eliminate the stress of having to remember everything – the use of MyTherapy gives you peace of mind and enables you to spend more quality time with the person you care for.
Your beloved one uses MyTherapy and you connect to him or her via the team function:
Of course it is also possible that your loved one may wish to feel less dependent and might like to take control of his or her therapy. The app will then simplify the daily routine and ensure a lot of self-responsibility. You as caregivers have the opportunity to connect via the team function and be his or her personal safety net. You will be able to see the status of medication as well as the therapy progression and their vitals. Most importantly, you are able to see if all medication is taken properly and in case your loved one forgets to do something, you can be the additional reminder.
The outstanding ease of usability for patients of all age groups has been proven many times. Also, MyTherapy’s impact on medication adherence has been demonstrated by several studies with reputable research institutes including Germany’s largest university hospital Charité Berlin. Recently MyTherapy was awarded with the Kindness for Kids Award for “MyTherapy DermaKids”, a collaborative-project with the University hospital of Munich (LMU). MyTherapy was started in Germany and strictly protects data privacy: you can use the app without subscribing and your personal data will not be shared with third parties. The MyTherapy app is free of charge and can be downloaded in the Google Play Store and in the App Store.
MyTherapy is the app for caregivers and the people they care for. Of course it can never replace the physical care and our unconditional love. But it can help to simplify daily routines and formulate an insightful overview for personal and professional use. Have a try and see how it can support you.
Remembering to take medications goes way beyond remembering to take a pill in the morning and one before bed. We’ve got charts on the fridge or spreadsheets or notebooks to tick off which medications get taken when — and which ones they’ve actually taken. You don’t want anyone to accidentally take their medications twice.
There’s got to be a better way, right? Well, there is. It’s Medisafe, a medication reminder app.
If your loved one struggles in managing their medications — with a little help — this could be the perfect tool for you.
How does Medisafe work?
Patients download the app and can connect with their caregivers, whether it’s a family member, a friend, or someone on their treatment team. They get notifications when it’s time to take their medication. If they mark that they’ve taken it, they’re all set. If they ignore the notification, their family member gets a notification and can check in with them.
There’s no need to type in medication information. You can get your medication information straight from your clinic by connecting to your patient portal. If your clinic isn’t on the list yet, , it’s easy to add things manually. Naturally, Medisafe is 100% HIPAA compliant.
Medisafe works with caregivers, by letting us know when a dose has been skipped or taken improperly. It also:
provides helpful reminders on when it’s time to order a refill
keeps track of doctors appointments
monitors health stats, like glucose levels
provides personalized information
share, email, or print records for your family or doctor
Medisafe also provides you with instructions on how to take medications, potential side effects, safety information, and other helpful things to know about the medications your loved one is taking.
Medisafe also keeps track of medications you take as needed, like Tylenol. Because certain medications might also contain Acetaminophen, it’s easy to accidentally overdose. Medisafe will help you keep track of these meds.
Know what’s working — or not
The simple charts in the app make it easy for people to see their glucose levels stabilize or their blood pressure fall within the normal range — making them more likely to continue taking their medications, because they can see them working. You can import information from wearable devices or pull it in from Apple’s Health App or Google Fit.
Of course, Medisafe isn’t for everyone. The person you’re caring for needs to be comfortable using a smartphone and able to reliably report what medications they’ve taken. If that doesn’t describe the person you’re helping, there are plenty of other medication management tools out there to help.
The list of things that need to happen when a loved one is diagnosed with a serious illness is huge…and keeps changing. There’s so much research to be done, doctors chosen, appointments scheduled, records requested, insurance disputes, disability claims, trips to the pharmacy, someone to pick you up after appointments. Your life is taken over by the endless task of coordinating care.
When I ask caregivers how we can better support them, the answer is always ‘come clean my house.’
The laundry keeps piling up, the dog still needs to be walked, the utilities need to be paid, the kids still need rides to parties and someone to make dinner. What about work? How are you going to pay for all of this?
Ashley Reid founded Wellist to help you shorten your to-do list. Wellist helps your support network take over the little things so you can focus on what’s really important.
One of the biggest issues faced by family caregivers is that you don’t know what other people can help you with — and people who want to help you don’t know how.
This not knowing what to do makes things more stressful for everyone — and can have serious consequences. A strong social network of family and friends provides patients with a level of care that can’t be matched by social workers and home health aides.
Wellist addresses those factors two ways: by connecting caregivers and patients to reliable service providers and helping them get the financial support they need.
Caregivers don’t always know what they’ll need until they need it, leaving them to scramble to find service providers. Doctors are restricted from recommending for-profit services, so patients and caregivers are left to wade through listings on their own. Wellist solves both of these problems by helping patients and their families understand what services they might need and providing verified listings with reviews from other patients.
Once caregivers have figured out what services they need, there’s still the matter of paying for it. Wellist makes it easy to share a list of the services needed so friends and family can make donations. All of the money donated — 100% — goes directly to the patient.
Covering the cost of parking or make sure groceries get delivered is something that’s easy for loved ones to chip in for. People want to help and are happy to know what you need. And it’s one less thing for you to worry about.
The Caregiver Space is here to support caregivers, but we’re not the only organization that’s here to help! Here are resources our community has found helpful. Please note that this isn’t an official endorsement and we’re not affiliated with these organizations.
Is there an organization or resource that’s helped you that isn’t on the list? Let us know.
For more than 100 years, the American Cancer Society (ACS) has worked relentlessly to save lives and create a world with less cancer and more birthdays. Together with millions of our supporters worldwide, we help people stay well, help people get well, find cures, and fight back against cancer.
30 years ago, the American Institute for Cancer Research was founded on a simple but radical idea: everyday choices can reduce our chances of getting cancer. We were the first organization to focus research on the link between diet and cancer and translate the results into practical information for the public. AICR embraced the mission of changing lives to save lives.
CancerCare is a national nonprofit organization providing free, professional support services to people affected by cancer. Services include counseling and support groups, education, publications, workshops and financial assistance. All services are provided by professional oncology social workers and are offered completely free of charge.
Cancer Commons, founded in 2011, is a non-profit network of cancer patients, physicians, and scientists dedicated to improving outcomes through precision oncology. Our mission is to ensure that patients are treated in accord with the latest knowledge available, and to continually update that knowledge based on each patient’s response. By tightly integrating research and care around individual patients, Cancer Commons aims both to dramatically improve individual outcomes and slash the time and cost of drug development.
Cancer Hope Network is a national organization offering personalized one-on-one support to people diagnosed with cancer and to their caregivers. Through our Vision, we are committed to strive for excellence in everything we do and to provide the highest quality of service to those calling for support. With over 400 cancer support volunteers representing more than 57 types of cancer; our Mission, through the delivery of our services, is to instill HOPE, ensure no one faces cancer alone and make a positive difference in the lives of those who have been diagnosed with cancer as well as those who care for them.
The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone.
Triage Cancer is a national, nonprofit organization providing information and resources on the full spectrum of cancer survivorship issues to patients, survivors, caregivers, advocates, and healthcare professionals, through a national Speakers Bureau, educational events, and online tools. Triage Cancer also offers an educational blog.
Cancer starves people of nutrition. We use nutrition to fight back. Nutrition is one of the few things in life you can control. We use the latest research to design personalized nutrition solutions that meet your unique needs. Savor Health is like having your own personal nutrition concierge. Whether you need someone to do it for you (Delivery), empower you to do it (Information) or answer your questions (Counseling), Savor Health is the comprehensive nutrition solution to address all of the nutritional issues experienced by cancer patients and their caregivers. We’re in the business of nourishing the body, mind and spirit of people with cancer.
A fashionable line of bags, bras and surgical accessories for the modern age of medical treatment. The Breast BFFLBag® and axilla•pilla® were launched in 2011 to enhance the breast cancer patient experience. Since then, BFFL has created the Neuro/Brain BFFLBag® for patients recovering from Traumatic Brain Injury, Brain Trauma, Concussion, Brain Tumors and Stroke. The Mommy/Delivery BFFLBag®, Prostate BFFLBag®, and many comfort bras and recovery accessories are among the newest additions to the BFFL Co product line. For each condition-related BFFLBag® sold, BFFL Co will donate 15% of the proceeds to a charity providing research and support for that condition.
Brave Girl Boxes is one way for women to remember and believe that people are rooting for their survival! After all, if you’re going into battle, you need the proper tools to stay strong, to be positive and to feel empowered. The boxes are intended to deliver love, encouragement, hope, understanding, nourishment, connection and comfort. Women need to feel that they are not alone so they can bravely move forward and fight! We deliver COURAGE to women newly diagnosed with breast cancer.
Since 2007, Fifth Season has provided more than $60 million in financial assistance to nearly 400 families who have an advanced stage illness or advanced cancer. Fifth Season Financial provides loans to people living with advanced cancer, secured solely by the face value of their life insurance policy. The goal of our “Loans for Living” program is to provide individuals access to discretionary cash locked up in their life insurance policy, while preserving a portion of the policy benefit for the insured’s beneficiaries.
Wellist connects you with help when it matters most. Wellist is a one-stop resource of healthy living services customized for patients and caregivers. Easily find transportation, support groups, acupuncture services, grocery delivery, and more from a database of over 3,000 different organizations and nonprofits.
There are 72,000 people age 15-39 diagnosed with cancer each year, but young adult cancer patients are overlooked by researchers and organizations dedicated to supporting cancer patients and their loved ones. Stupid Cancer addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.
More children in the US die from cancer than any other disease, yet many treatments are based on what’s worked for adults. Curing cancer in kids isn’t enough — by the time they’re 45, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions because of their childhood cancer treatment. St Baldrick’s is raising money and raising awareness to change that.
We provide mesothelioma patients with free resources, support, education, and referrals to experienced mesothelioma doctors. We are a current sponsor of the American Cancer Society, MD Anderson Cancer Center, Make a Wish Foundation, and the National Patient Travel Center. We’ve also established a scholarship for high school and college students that will help further educate students of this rare cancer.
Kinsights is a site that connects parents — and is a fantastic resource for parents of children with special needs, disabilities, or illness. Kinsights also stores important medical information and records, making it easy to keep everything organized and have fast access to it when you need it.
Jennifer Chung, Kinsight’s founder, was kind enough to chat with us:
What sparked the idea of Kinsights and what do you think is the most essential part that has made your company such a success?
The idea was born from Dr. Carol Wilkinson’s experience as a pediatrician (she is the Kinsights Medical Director) – she saw that parents were often coming to appointments with lists of questions, but many of their concerns could be addressed in a more relevant, actionable way by other parents who share similar experiences. But there weren’t great alternatives to facilitate these interactions between parents. Parents would often turning to busy and cluttered parenting forums, where the information can often be confusing or misleading.
We take a very different approach to the parent experience within our community. As a parent uses Kinsights, we’re able to better understand their interests, health concerns, content preferences, whose opinions they value, where they need help, and how they can help the community.
When a parent poses a question, we’re able to identify the subset of parents who are most able to provide guidance. For example, the parent of a preemie with cerebral palsy dealing with separation anxiety can get advice from a parent who has experienced with the same combination of concerns. And quality matters – the community votes up thoughtful, thorough answers and the questioner selects the answer that best addresses his/her needs.
Can you tell me more about your personalized matching system? And the private groups?
We leverage a unique relevance engine to connect our users to the right groups of parents – so whether you are dealing with a medical condition or seeking recommendations on local schools, we can find parents within our network that have local and/or topical knowledge and experience. We can also recommend resources and support groups, based on your profile, interests, and concerns.
We partner with organizations – parent groups, non-profits, and employers – to create customized communities within our platform. Some of these are public groups that our parents can join, and others are completely private groups, only accessible to their existing community.
Kinsights wasn’t created specifically for kids with serious health conditions, was it? How did special needs and acute care become such a big draw for people to your community?
Kinsights was created to serve all parents – whether you were dealing with a behavioral issue, needed help finding a school, or have a child with a medical condition. As soon as we launched a tool for parents to start their own groups, parents started creating support groups for their child’s condition. What we’ve found is that parents of children with rare or complex medical conditions often have a day-to-day need for a community of parents who have truly been in their shoes before, as they navigate the social, emotional, and healthcare challenges their family faces.
How does Kinsights work if a person’s medical records are currently on paper? Can users sync their Kinsights account with their doctor’s office?
Parents enter and track data on their child’s health, and we make this process extremely easy – we use industry-standard vocabularies in the background and an incredibly intuitive, easy-to-use interface that enables parents to track problem lists, medications, developmental milestones, immunizations, and more. We’re starting to collaborate with a few partners that will facilitate data entry from paper records into our health record.
Kinsights seems like a natural extension of the quantified self movement. Is that accurate?
In some ways, yes, in that we help parents track data on their child’s health – but we focus heavily on the actionable end of that data. For our parents, health data provides some initial context – and as a parent uses Kinsights and engages with the platform, we’re able to better understand their interests and needs, so we can surface relevant content and community members.
Do you have a personal story you’d like to share with us about your connection to healthcare and caregiving aside from your scientific, clinical and professional endeavors?
I’m part of the sandwich generation – I have a 4-year-old son and parents in their late 70’s. Luckily, I have two sisters and we often split up responsibilities and check in with each other frequently. Connecting with other adults who are feeling pulled in both directions has been incredibly valuable for me – most of the time I just need a patient ear, but sometimes I also need well-researched advice. In many ways, Kinsights serves that same purpose for parents all over the country.
What is the main takeaway you want readers to know about the goals and mission of Kinsights? Is there any advice you can give to caregivers?
The connection between parent mental and emotional health and outcomes for children has been demonstrated in studies across multiple pediatric conditions. Traditional online communities can address the need for an emotional connection, but they are often the gateway to information overload. Kinsights facilitates those peer-to-peer connections, while providing smart filters that improve both the quality and relevance of interactions, so that parents feel supported instead of overwhelmed.
Welkin Health is working to provide continuous patient support, using a mix of technology and people with the hope of better serving patients and their families. Most of the tools Welkin Health provides help care teams work better together, but they also make it easier for patients and caregivers to get the information they need, when they need it.
I got a chance to speak with Chase Hensel, Co-founder and CEO to talk about his vision for Welkin Health.
Why is now the time to tackle chronic care management?
Chronic disease is an epidemic in this country. As of 2012, half of U.S. adults had one or more chronic health condition. We are seeing more and more patients with chronic illnesses who need to be monitored in order for them to be able to successfully self-manage. At a time when the state of healthcare is in crisis for so many, we wanted to create a platform that would empower healthcare providers to give the best care possible to this population, moving the system in a more positive direction— for patients and providers.
What inspired you and Gideon to found Welkin Health?
Healthcare has been a passion and interest of ours for some time. Population health management is antiquated at best. It’s not consumer friendly, it’s ineffective for patients and providers, and it hasn’t progressed to meet today’s rising population of chronically ill patients. To us the solution was clear; create a platform that will help case managers keep in better touch with patients during the critical time between office visits.
Human relationships are at the center of successful disease management programs, and we wanted to make technology to support the formation of strong relationships between patients and their care teams. The beauty of the Welkin platform is that it can be tailored to meet the unique needs of care coordinators and their programs. Our goal is to give providers the latitude and creativity they need to run programs that will optimize their patients’ health and wellbeing. Our platform enables them to do so.
Patient adherence is notoriously low. How does Welkin Health help make it easier for patients to follow treatment plans?
It’s about putting a greater focus on making it convenient for patients to engage. Welkin’s platform gives patients and providers the tools necessary to easily communicate on a daily basis via whatever means is most comfortable for the patient, whether that’s phone calls, SMS, email, or our smartphone app. This helps ensure that patients adhere to their medication, diet plans, and exercise routines and have the support they need to stay healthy.
We sit down and have conversations with the program organizers in order to configure a system that will give life to their opinions and best support their programs–whether it’s for diabetes, substance abuse, mental health or another area they want to focus on. Providers know best what will bring their patients the most success so we help them put those protocols in place.
Patients and caregivers aren’t familiar with care pathways and providers are managing many patients at once. Would you say Welkin’s tools help ensure proper follow-up care is scheduled?
Absolutely. Follow-up care is critical for the patients living with chronic disease and the providers treating them. We configure our platform so that it prompts care teams to reach out to patients and their caregivers according to their organization’s standard of care as it applies to that particular patient’s situation. Welkin can also be configured to send automatic reminders, messages, and encouragement to patients in whatever way the organization thinks is best.
The role of the ‘care coordinator’ is becoming more common. What do they do and who was previously filling this role?
The care coordinator serves as the “go-to person” for patients after they visit the physician’s office or leave the hospital. It’s a critical role for patients with chronic disease where good follow up care and healthy lifestyle choices are so necessary for patient success. The care coordinator keeps in close contact with the patient on a frequent basis — answers questions, address concerns, help monitor the patient’s diet, exercise and medications, ensures follow up appointments are made —and regularly updates the patient’s doctors. Previously this role fell to busy doctors and nurses who simply did not have the time or the resources to effectively track patients once they left the office. Effective communication with the patient suffered. As we see chronic disease rising and patients who require more frequent care, the development of the care coordinator role was born from necessity and has improved patient care for the better.
Can mobile health apps change the way patients receive care, even if they aren’t particularly tech savvy?
If patients aren’t tech savvy, then you need to engage them via channels that they are comfortable with or you will not get good engagement rates. That’s why the Welkin platform has focused on making phone calls, SMS and email really easy and accessible for patients in ways they are already used to, so that they don’t need to learn new tools in order to benefit from our platform.
Do regulatory requirements, such as HIPAA, create a serious burden to building tools that are easy to use?
Protecting our patients’ information is critically important to us so we use requirements such as HIPAA as guidelines rather than obstacles to ensure we develop the most secure technology possible. At Welkin security is a full company endeavor and we take many additional security measures beyond the basic HIPAA requirements, such as multiple encryption passes, to protect patient data. Having the right company-wide policies and procedures in place is also key. Building tools that are easy to use is more of a usability/user experience challenge — healthcare has a lot of complex workflows, and the biggest challenge is designing tools that are easy to use for both providers and patients.
Some people fear that technology will come between them and their doctor. Is that something that might happen?
We think it’s the opposite. We see technology as a tool that’s helping to bridge the gap between patient and provider that often occurs once the patient leaves the office. It’s creating a pathway for more consistent, effective communication for one of the populations that needs it most—in this case patients living with chronic disease. Taking it a step further, many patients are finding comfort using social media platforms to learn more about their illnesses and share experiences with a larger community. It also gives doctors a chance to learn from patients if they are tuned in.
Knowing the huge costs of chronic disease to patients, their families, and the healthcare system, do you see Welkin Health bringing about a significant change?
We do. We’re finding that when patients are engaged, their overall health outcomes will improve and hospitalization rates are reduced. We recognize that healthcare providers know how best to work with their patients to bring them success. Our goal is to elevate their care programs by giving them the best possible communication platform for them to deliver personalized care to their patient populations outside of the clinic. We don’t expect providers to build their programs around our technology — we configure the technology based on what they need to make their program run smoothly and effectively. Treating chronic disease is costly, but many chronic diseases are preventable and can be managed if patients and providers are armed with the right tools to do so.
For close to 40 years, not-for-profit Road Scholar has made it possible for adults on limited incomes to experience its educational adventures through a generous financial aid program. In 2015, it expanded its financial assistance to individuals caring for an ill or disabled spouse or family member. In all, the organization has dedicated $250,000 in annual funds to make the enriching benefits of lifelong learning accessible to all older adults.
Road Scholar is actively seeking applicants for these new, $1,300 caregiver grants for caregivers to offset the cost of attending a U.S. based Road Scholar learning adventure. We are reaching out to caregiver support groups, senior citizen centers, adult day services groups and organizations like thecaregiverspace.org to get the word out. Interested applicants can visit www.roadscholar.org/caregiver to learn if they are eligible.
Daniel and His Starry Night Blanket: A Story of Illness and Sibling Love is the tale of a young boy whose older sister gets cancer and, from his perspective, too much of the family’s attention. Written and illustrated by Sally Loughridge, the book focuses on the emotional impact of his sister’s illness and treatment on him. The author’s unique background as a professional artist, cancer survivor, and retired clinical child psychologist enriches both the story and the art. Daniel and His Starry Night Blanket is an appealing fictional full color picture book, yet one grounded in sound knowledge of child and family psychology.
When a child has a critical illness, parents must cope with the diagnosis, the treatment course, and their own emotional responses, but as importantly, each child’s understanding, reactions, and adjustment. Young siblings may feel abandoned amid intense parental attention to a sick brother or sister. They may envy the special treatment a sibling receives—gifts and even stays on a pediatric ward. They may believe that they caused the illness because they were mean to a brother or sister. They may be scared they too will become ill or die. Emotions often vacillate quickly, from sadness to anger, envy to worry. In the face of such a crisis, emotional development may even be temporarily derailed.
There are several other books about healthy siblings of children with serious medical challenges, but none attends to the younger sibling. This book addresses the impact of his sister’s illness on him in the context of his ongoing emotional and cognitive development, which affects his ability to understand and stay steady during her treatment journey. His changing connection to his special blanket reflects—literally and metaphorically—his emotional growth. Despite Daniel’s fierce attachment to his blanket, he learns to share and over time, to comfort his sister with it.
Daniel and His Starry Night Blanket can help children feel more comfortable speaking about their feelings, enable family discussion about difficult health matters, model strategies for parents, and aid both sick and healthy children understand one another more empathically. While the book can assist children and families, it is not a substitute for therapeutic intervention.
Sadness, anger, worry, envy, loneliness—young Daniel experiences each of these intensely when his older sister gets cancer, and from his perspective, too much of the family’s attention. Written and illustrated by Sally Loughridge, Daniel and His Starry Night Blanket focuses on the emotional impact of Kate’s illness and treatment on him. The book was released on August 1 by Maine Authors Publishing. Loughridge’s unique background as a professional artist, cancer survivor, and retired clinical child psychologist enriches both the story and the art.
When a child has a life-threatening illness such as cancer, parents must cope with the illness and treatment course, their own emotional responses, and each of their children’s understanding, reactions, and adjustment. Daniel’s changing connection to his special blanket reflects—literally and metaphorically—his psychological growth. Over time, and with his parents’ patient help, his understanding and empathy grow. Despite fierce attachment to his blanket, he learns to share and comfort his sister with it. At the book’s end, he expresses his love for his sister in a generous, creative gesture.
“This lovely story acknowledges the many dimensions of a sibling’s experience when a brother or sister is diagnosed with cancer,” says Darah Curran, MSW, LCSW, Pediatric Oncology Counselor at Inova Life with Cancer in Fairfax, Virginia. “The thoughtful words and illustrations normalize siblings’ feelings and encourage more open dialogue within families about an often overlooked aspect of pediatric cancer.”
The audience for Daniel and His Starry Night Blanket includes siblings, patients, parents, and the broader family on a journey through life-threatening pediatric illness such as cancer or cystic fibrosis. Each year there are over 15,000 children between birth and 19 years diagnosed with cancer (American Cancer Society 2014) and over 1000 new cases of cystic fibrosis (Cystic Fibrosis Foundation, 2010). Of these diagnosed children, over 75 percent have siblings (Pew Research Center, US Census Bureau, 2014).
Daniel and His Starry Night Blanket can be used in the home setting or with the guidance of a pediatric oncology counselor, child life specialist, social worker, art therapist, psychologist, teacher, or other childhood professional. The book can support the younger sibling of a child with a life threatening illness; help both the ill child and their parents understand reactions of younger siblings; and model strategies for parents in balancing attention to all their children.
When Loughridge had breast cancer in 2010, she used art and writing as a personal coping strategy on each of thirty three consecutive days of radiation treatment after surgery. This private visual and written journal later became Rad Art: A Journey Through Radiation Treatment, published by the American Cancer Society in 2012. This book has won four national awards: Gold Medal in the book category, Association TRENDS All Media Contest 2012; Finalist in Women’s Issues category, Next Generation Indie Book Awards 2013; Winner, Women’s Issues, USA Best Book Awards 2013; and Finalist, Health-Cancer, USA Best Book Awards 2013. As a psychologist, Loughridge co-authored three books for children going through significant family change: The Divorce Workbook, Changing Families, and My Kind of Family (Burlington, VT: Waterfront Books 1985, 1988, and 1990).
by Elise Bogdan
Suggestions for parents with their children
The book can be shared individually with your children or together, based on the age and comfort level of each.
Reading the book several times, or even in parts, may work best for a young child.
Leaving the book accessible will invite a child to return to it and help normalize intense reactions similar to Daniel’s.
Your child may identify with the story’s characters or distance himself from them. Whatever his perspective, the book can be a springboard to help a child feel more comfortable and safe in expressing feelings.
If your child is regressing in achieved milestones or behaving repeatedly in unusual, hurtful ways, speak with his or her doctor for guidance and the possible need for therapeutic assistance.
Suggestions for activities for children (selection dependent on age)
To encourage expression and provide support, invite a child to draw in response to one or more of these trigger ideas.
Draw your family.
Draw your sister or brother before and after they got sick.
Draw yourself with your sister or brother.
Draw yourself doing something fun with your mother, father, or sibling.
Help the well child find ways to spend time with the ill child, even in new and different ways.
Help the well child find ways to do kind things for the ill child, and vice versa.
Schedule private activities for the well child with parents, grandparents, neighbors, and friends.
About the author: Sally Loughridge, Author and Illustrator
Sally Loughridge, PhD, is a professional artist, cancer survivor, and retired clinical child psychologist who believes strongly in the power of art in its many forms to foster understanding, connection, and healing. Daniel and His Starry Night Blanket is the tale of a young boy as he is impacted by his sister’s cancer journey. A story of illness and sibling love, the book reflects Sally’s deep empathy for those going through serious illness, whether as patient or family member, and her expertise as a child psychologist and visual artist.
Raised by creative, curious parents, Loughridge lives on the coast of Maine where she is inspired by the beauty and ruggedness of the landscape and the resourcefulness of her people. She exhibits her paintings in galleries and invitational shows. Using the mediums of oil and soft pastel, she tries to convey her emotional responses to the beauty and power of Maine and the ever-changing light which graces it.
Loughridge is also the author of Rad Art: A Journey Through Radiation Treatment (Atlanta, GA: American Cancer Society 2012). The book presents the personal visual and written diary she kept over thirty-three consecutive days of radiation treatment after surgery. As a clinical psychologist, she co-authored three books for children going through significant family change: The Divorce Workbook, Changing Families, and My Kind of Family (Burlington, VT: Waterfront Books 1985, 1988, and 1990).
Planning has gotten a lot simpler for some of us as marriage has become more inclusive, but the laws regarding healthcare and marriage have been in flux for a while. Of course, changing laws don’t immediately change people’s attitudes – and that’s especially anxiety-inducing when it’s your healthcare team or nursing home roommate who’s giving you trouble.
Questions to answer today
Are you the next of kin for hospital visitation and emergency medical decisions?
Do I need to keep all this paperwork on me all the time, just in case?
Could your partner’s family step in and make their medical decisions and even bar you from visitation?
Can you be covered under your partner’s health insurance?
Can you qualify for Medicaid or Medicare through your partner?
What happens to our kids if one of us dies?
Can you transfer property to your partner?
Do you qualify for FMLA for your partner or their parents?
Do you qualify for bereavement leave if your partner dies?
Would you qualify to file a wrongful death suit?
Can you inherit your partner’s pension or recieve Social Security survivor benefits?
Will you be required to pay taxes on your residence or partner’s savings when they pass away?
Could your partner’s estranged family step in to make memorial decision and claim their assets?
federal law provides at least 1,138 tangible protections, rights, and responsibilities with marriage — and that doesn’t include state and local law, and employers, or the intangible security, dignity, and meaning that come with marriage. – Freedom to Marry
As they try and take care of each other and their families, they have the same sets of economic decisions to make as everyone else. But same-sex committed couples experience numerous economic injustices directly connected to their exclusion from the protections marriage provides under the law. – Freedom to Marry
It’s a major concern of caregivers that our loved ones be given proper care. But there are times we ourselves do not have expertise or resources to administer this level of care, and there is need for a third party to get involved. Trust becomes paramount as we are plagued with questions about how our loved ones would fare in the hands of this third party. The often negative reports we receive concerning the third party, which in this case are health facilities, does nothing to lessen our fears. But still we are in need of these facilities, so we must be smart in making a decision. Here are lists of online resources that helps caregivers in their decision making about the right health facility to choose for a loved one.
This online resource ranks nursing homes by states, let’s you browse the best nursing homes near you, and provides guides on how to choose a nursing home, how to cover the cost, and how to guarantee good care. With quick to read tips such as 7 Red Flags to Watch for When Choosing a Nursing Home and 9 Warning Signs of Bad Care, US News is a good place to start your search for a trustworthy healthcare facility. Its reputation as the leading provider of service news and information that improves the quality of life of its readers, also makes it a very reliable source. In addition to ranking nursing homes, it also ranks hospitals, healthcare plans, and diets. Helping you find doctors by name, specialty, state, city and or zip code are also included in the service it provides. With answers to FAQs about how health facilities are rated, US news helps one make an informed decision about choosing a healthcare facility.
This is a good place to start your search, whether you need lots of information or just quick information. For mental health facilities, you can begin your search with information on how to find mental health facilities, and type of care, such as inpatient, outpatient, residential and administrative only. Other information provided includes the types of disorder treated in these mental health facilities, and what to watch for in choosing a mental health facility. You can also compare mental health facilities and get information on age and payment accepted, special programs, and payment assistance. Other resources includes a list of facilities and clinics for specific cares such as cancer, eating disorder, dialysis, substance abuse, elder care etc. With plenty of relevant information that helps one choose the right health facility, Health Grove truly stays true to it’s tagline “Research with confidence”.
With the stated goal of making information on physicians and hospitals more accessible and transparent, Health Grades is all about finding the right doctor, hospital and care for people. It let’s you search for specialist by condition, procedure and specialty. Based on the particular health condition, resources on how to prepare for a doctor visits, what to expect and more are provided, it also provides treatments and coping tips. Additionally you can take an online health test on behalf of your loved one based on the condition and symptom they have.
With lots of information to guide your decision making, you can breathe easy when choosing a health facility and or doctor for your loved one. Any of these three online resources is a good place to start your research.
We’re always looking for ways to simplify complex medication regimens, so I was excited to find out about PillPack.
1 in 10 adults in the US takes 5 prescription medications a day.
TJ Parker’s family runs a long-term care pharmacy and went on to become a pharmacist himself. Elliot Cohen is an engineer and advocate for customer-empowered healthcare. They came together to make the lives of caregivers easier and dramatically reduce the rate of medication errors by founding PillPack.
TJ knows that managing medications can be a full-time job. There are dozens of containers, refill dates to remember, and constant trips to the pharmacy. I think we all have our own labelling systems to make sure our loved ones take their medications in the right dose at the right time. He knew there had to be a better way – one that would be simpler, and safer, for everyone.
TJ explained, “As a second-generation pharmacist, I spent most of my life watching people struggle with managing their medications — dozens of pill bottles, weekly trips to the pharmacy and time-consuming DIY organization — while their pharmacists had limited resources to help. I knew there had to be a better solution if we could simply marry this industry with design and technology.”
Your days of pre-sorting medications are over.
PillPack was designed to take the guesswork out of managing medications and it’s been a great success. TJ shared how “we’ve heard from the sons and daughters, who live thousands of miles away from their parents, telling us about the joy and relief they’ve had from being able to help manage everything remotely online, confirming shipments have been mailed bi-monthly, and knowing everything is taken care of.”
Available in 47 states, PillPack is an online pharmacy, but better. Every two weeks, customers receive a personalized roll of pre-sorted medications, along with a recyclable dispenser and any other medications that cannot be placed into packets, like liquids and inhalers. Vitamins and other supplements can be included in the package. Each shipment includes a medication label that explains what each pill is and how it should be taken. This sheet is a useful tool to bring along to doctors visits and the ER, when you’ll need to be able to provide a list of the medications someone is taking.
Not only does PillPack pre-sort medications, it also manages refills. Medications are guaranteed to ship on time and you can track shipments, refills, and co-pays online. There’s no additional fee to use PillPack, so you pay the same standard co-pay as with any online pharmacy.
PillPack is an online pharmacy, but you still have the same access to pharmacists that you always have. TJ explained how eliminating the need to spend your time with the pharmacist untangling insurance issues means “our customers can just focus on taking their medications and nothing else, and our pharmacists can focus on service.” Customers can email or call their PillPack pharmacist with questions any time.
If the person you’re taking care of forgets to take their medications, you’re in luck. They’re currently developing an app to remind PillPack users when it’s time to take their medication. You can look for that to come out in the next month or two. It’s a huge step forward that makes the lives of people helping their friends and family manage medications much easier.
I heard about PillPack through the folks at TEDx, so I knew PillPack came out of a Hackaton at MIT. I asked TJ to share a little more about how he got involved: “Elliot Cohen and I were actually two of the original founders of Hacking Medicine at MIT, so it was a bit rigged 🙂 Hacking Medicine was a really great way to get feedback on our idea and it really helped validate the idea was worth working on. It was the catalyst that enabled us to start PillPack.”
Notable for her extensive advocacy, Dr. Temple Grandin talks about autism and sensory issues. She tells how she overcame many of her challenges, gives functional and pertinent tips, and addresses questions in an easy to reference Q&A. Her advice and perspective is based on up-to-date research plus personal experience. In addition, the book exhibits illustrations that demonstrate the way people with autism think, as well as personal brain scans of Dr. Grandin.
Dr. Temple Grandin, a source of inspiration for autistic children, their parents — and all people, received Time magazine’s 2010 choice of a “hero” in their annual TIME 100 issue, as they honor the “100 Most Influential People.” Temple was recognized for her leadership role as an author, visionary, and speaker in the fields of autism and animal science, in which she is an advocate of the humane treatment and understanding of both.
One problem today is that too many kids with autism do shut down and they shut down so much they risk becoming recluses. A psychologist recently explained it to me in a good way. He said that there is a tendency for their world to contract. Well, we must work on gently expanding their world. That’s what I want to help you do with this book. Dr. Temple Grandin
by Jennifer Yacio, Sensory World, A Proud Imprint of Sensory Focus, LLC.
Currently 1 in 68 children are diagnosed with Autism or fall somewhere on the spectrum. As this number grows, it essential that people who care for persons with the disorder have support, guidance, and helpful information to turn to in times of need. As we are quickly approaching April, National Autism Awareness Month, it is important to highlight resources to help caregivers, both family and professional. Check them out below.
1. Autism Action
Autism Action’s mission is to better the lives of people who fall on the Autism Spectrum. They strive to improve the quality of persons with ADS through education, support and providing high-quality resources to the community.
2. Autism Now
Autism NOW is an amazing resource that focuses on providing the best comprehensive information for individuals with ASD (Autism Spectrum Disorder), which includes: education, health care info, aging issues and caregiver and family support.
Anyone who considers themselves a caregiver, in any sense of the word, should read this book. It serves as a guide with a wealth of information that is both helpful, supportive and enlightening. It brings a light-hearted openness to the experiences of parents with children who fall on the Autism Disorder Spectrum.
The PRT Pocket Guide is a wonderful resource for parents, educators, teachers, social workers, and others who care for those with ADS. It offers a clear view of the condition and how caregivers can better understand, using real-life experiences from various people in these positions.
This is the second edition of Overcoming Autism by clinician Lynn Kern Koegel and writer Claire LaZebnik, who gather useful tips and information on the disorder, while taking you through the process of caring for people with ADS through a nurturing and knowledgeable lens.
6. Autism Family Online
Autism Family Online understands the challenges that families face dealing with those on the Autism Disorder Spectrum. For this reason, they offer many programs to fulfill the needs of caregivers and give them necessary tools and skills to navigate dealing with the disorder.
7.National Autism Network
National Austism Network is one of the largest online resources for people in the autism community. It provides a space to connect, learn about news, articles, events and other resources to deal with ADS.
8. Autism Speaks
Austism Speaks is a resource that offers critical research and support for caregivers. Their mission is to make strides to understand the disease and give a voice to caregivers.
9. Autism Community
Autism Community focuses on shedding light on many topics that encourage communication within the community, provide education, and resources for caregivers.
10. Centers for Disease Control and Prevention
The CDC works tirelessly to understand and combat diseases, while also providing support and information to its community and citizens. This is the go-to spot to find up-to-date information, news and extensive research on ADS.
The Caregiver Space is here to support caregivers, but we’re not the only organization that’s here to help! These are resources our community has found helpful. Please note that this isn’t an official endorsement and we’re not affiliated with these organizations.
Is there an organization or resource that’s helped you that isn’t on the list? Let us know.
Oftentimes it can be challenging to take care of children with special needs or disabilities. Here is a list of inspirational books that will give caregivers techniques on how to cope with such situations.
by Rachel Adams is a beautifully written book as Rachel explains the first three years of her son’s life, who was challenged with down syndrome. Throughout this book Rachel is honest, funny, and smart. Interesting enough, Rachel is a scholar of disabilities and she expresses her concern toward the medical community. The medical community oftentimes only see children who suffer from special needs as patients or bearers of a medical condition. This book is recommended for mothers and families who have children with special needs.
by Jennifer Graf Groneberg is written with honesty, love, strength, and hope. Jennifer shares her experience of raising twins boys, one who has been diagnosed with down syndrome. Jennifer expresses her ups and downs to her readers. You wouldn’t want to put this book down as she writes from the heart.
by Michele Gianetti is an inexpensive read as it conveys love, devotion, and faith. As Michele learns that her daughter is diagnosed with dyspraxia and sensory processing disorder, she gives turns to God. This book is recommended as Michele shares her struggles and heartbreak of her daughter’s first few years, including the joyful moments that is to come.
by Kerry Cohen is a quick and pleasant read. Kerry touches base on the hardships as a mother and wife while caring for a son Ezra who challenges with autism. Kerry is a brave writer who reveals her emotions toward Ezra different ways and the time spent with therapists.
by Mia wyn is a uplifting book written in a poetry style filled with hope. When Mia discovers that her son Joe is diagnosed with Cerebral Palsy, she tries everything to get her son to make progress. Nia devotes her life to Joe even when the doctors told her that it would be worthless. This book is written for anyone who is overwhelmed by obstacles.
by Elizabeth M. Bonker , Virginia G. Breen is a spiritual journey between mother and daughter. Although, Elizabeth has autism and cannot speak, she will guide you with her poetry. Elizabeth and her mother Virginia are strong and determined as they challenge obstacles. This both is recommended due to its inspirational impact.
No one could ever be prepared for caregiving but with traumatic brain injury, a level of unrivaled intensity comes with the territory. These books offer insight, guidance, and support for caregivers of husbands.
by Lee Woodruff, Bob Woodruff is an amazing memoir of love, hope, and strength. Bob experienced a tragic accident that resulted in brain injury. With the help of Lee who is Bob’s wife, he was able to recover. As a caregiver to her spouse and a mother of four children, Lee deeply expresses her emotions throughout the ups and downs of this event. This book is recommended to caregivers and family members who may know someone that is suffering from brain injury. You might end up reading this book for a second time, that’s how great it is!
by Rosemary Rawlins is a touching story that reveals emotional healing, family love, and passion. After Rosemary’s husband Hugh gets hit by a car while riding on a bicycle, he suffered from traumatic brain injury. Rosemary tries her best to preserve her family as she copes with this life changing experience. This book is awesome as Rosemary writing style would make you feel as though you’re a part of the journey!
by Casey Bachus is a touching story as the author channels her love and faith for her husband. Casey’s life changed dramatically when her husband got into a car accident, which led to a traumatic brain injury. With Casey’s spiritual and inspirational guidance, this book is recommended to anyone that may be dealing with hardships and most importantly spousal care for brain injuries.
by Dora Barilla is an inexpensive book that will give you insight, hope, and inspiration. Bill who is Dora’s husband, was in a tragic accident when he got hit by a tour bus. As he suffered from traumatic brain injury, Dora’s world was turned upside down. This empowering story explains Bill’s miracle recovery. With Dora’s honesty and encouragement, you will love this it!
by Barbara Stahura is a memoir that touches base on joy, honesty, and courage. With humor, Barbara gives details about her husband’s near-fatal motorcycle accident and his recovery of brain injury. She expresses her deep fear toward the next step of her husband’s recovery. This book will literally make you laugh as Barbara share things that many authors do not.
Caring for a loved one comes with both ups and downs. It can frequently become overwhelming making it extremely easy for caregivers to lose themselves in the process. One helpful tool to deal with the stress and emotions that comes with caregiving is meditation. Meditation can be used as a simple tool to make your mind calmer, and gain balance for yourself as a caregiver. With all the chaos that can be thrown in a caregiver’s days, meditation is useful for alleviating the stress that comes with the job.
Here are some great meditation apps that can reduce stress in as little as 5 minutes!
This meditation app is voted #1 in over 30 different countries. It has received detailed reviews from The Huffington Post and CBS alike. After signing up on its home page, it is user-friendly, and can be used on any browser- Chrome, Safari, and Internet Explorer, or as an app on Android/itunes. It has 25 free tracks ranging from 2-3 minute quick meditation to longer 30-40 minute sessions. It’s mission is to actively promotes meditation, focus, relaxation, and sleep.
The first question that you will encounter using both the website and app is “How are you?” giving you free-range, and control to use the app to best fit your emotional and physical state on any given day. Breathe provides short 5-10 minute guided meditations tailored to your mood, and the feedback you give. Breathe is accessible over the internet, for free, and does not require logging in or signing up to use much of its guided exercises. The app also provides a list for you to track your progress, and learn what is working for you.
This app is a well regarded tool to help reduce anxiety and stress. The website readily allows you to access the interface, and plays soothing music as soon as you click on it. You can also sign up for newsletters on the website. Although the app itself is free, there are various subscriptions with additional resources that can be purchased for as low as $4.99 per month. The app comes with great resources such as 7 guided meditation sessions from 2 to 30 minutes, 10 expansive nature scenes, and 16 different music tracks by meditation music mastered plus new content added each month!
This is a great app that has multiple 3 minute voice-guided meditation exercises for people on the go. The exercises are easy to use, and can be stored on your mobile device for use at a later time. There are about 8 different speakers, and 14 sound landscapes to chose from making it a great, diverse fit for caregivers. It is free, and available for use on itunes.
Headspace encourages training your brain in the same manner you would train your body at a gym. Over a million users use this app and website! It has a 10-day free trial subscriptions, and costs $12.95 a month after. The app can also be used with a buddy to team up with while going through the various exercises.
Even when families are relatively well prepared financially, the process of preparing for later life can be complicated. Professional services can help guide families. However, some who present themselves as elder care planners might actually be working on a commission. They sometimes recommend unnecessary products or services for families who are trying to understand their options and make the best decisions for the care of their elderly loved ones.
The complexity and possible conflicts of interest leads some to avoid planning for care later in life; this is certainly a shame because of the many benefits of planning. People who plan for elder care and long term care costs report feeling an increased sense of control and reduced anxiety about the future. Further, planning and professional assistance can often help a family save on care and improve the quality of life for the elder.
This post describes the types of elder care planning services, from simple self-service options to the variety of specialists who help with specific cases. We share this with caregivers with the hope that it leads you to find the most appropriate assistance to start the process with your loved one. As with all planning, it is always better to start early.
Free Online Tools
There are a variety of online sites that provide free or low-cost guidance. The American Elder Care Research Organization maintains the ‘Elder Care Financial Assistance Locator.’ This free, self-service tool consists of a simple questionnaire to identify programs and services that are available to aging Americans. It searches over 400 regional, state, federal and private programs and compiles a list of only programs for which the elder is eligible or may become eligible. While this can be a fast and simple first step, families need to take the information and make their own plan. Click here to access the Elder Care Financial Assistance Locator.
Aging Services Agencies
Throughout the country, Area Agencies on Aging operate offices where families can come in and talk to a support person about their situation. They usually have an 800 number for toll free phone support as well. Because of their familiarity with local networks, they are great advisers on aging assistance programs that are available locally. Some are not as familiar with national, private and Veterans assistance programs. Because of the popularity of these free services, there can be wait times for an appointment. Find the phone and address for your local agency here.
Advisers from State Health Insurance Programs (SHIPs)
This little known service provides free, state-specific guidance on public health insurance benefits, especially for low income individuals. Typically staffed by well-trained volunteers, the toll-free SHIP hotline can be a welcome relief for individuals who are new to public health insurance—Medicare—or who anticipate having to file a claim for medical benefits in the near future. SHIPs advisers can also explain how Medicare Saving Plans help low income individuals reduce or eliminate their monthly premiums. While an excellent resource, the advisers may be limited, though, when it comes to the details on eligibility or how to become eligible for Medicaid benefits. Find your state SHIP contact information here.
Elder Care Resource Planners
A step up from free services would be to work with an Elder Care Resource Planner. They help elders and their families to identify financial assistance options and build a plan to fit the elder’s evolving needs for care. Their approach is comprehensive in that they will review all national, state and private programs to find the highest level of support. Elder Care Resource Planners are not as expensive as other types of professionals with prices that range from $500 to $1,500 per engagement. It should be noted, though, that while the Planner develops the plan families must take responsibility for following through on the recommendations. Learn more about Elder Care Resource Planners.
Many seniors may have to rely on Medicaid at some point. The Bipartisan Policy Center reported that Medicaid pays for two-thirds of the costs of long term care in this country. A Medicaid Planner that specializes in your state program can help families learn how to qualify for this program. In this area, it is often helpful to have guidance because of the complexity of the rules and the financial products that exist to help families qualify. This service can greatly improve the likelihood of an elder being accepted into a state Medicaid program. One drawback of Medicaid Planners is that they may not be able to guide families on the alternatives to Medicaid. Fees range from $2,000 for a simple case to as much as $5,000. Some work on a commission based on the sale of Medicaid-compliant annuities. Learn more about Medicaid Planning.
Geriatric Care Managers
While Geriatric Care Managers typically oversee the care of an elder, some also assist with some of the financial aspects. Because of the depth of their knowledge of the health needs of seniors, they offer a valuable service that helps families anticipate the changing needs of the loved one. They can also be quite knowledgeable about local prices and providers. They are usually educated as nurses or social workers. Although they may not have a financial planning background, geriatric care managers can help families understand whether their loved one would qualify medically for Medicaid. They typically charge hourly fees and rates range from $50 to $200. Search for a geriatric care manager in your area.
Veterans Benefits Planner
The Veteran’s Administration offers a variety of benefits to vets and their dependents. VA advisors help vets and their families save time and improve the chances that they will receive their full benefits. Although accreditation is not required, an accredited adviser can act as an official representative of the vet during the application process. Some advisers work for nonprofits or the government do not charge anything for their services. Private sector advisers might range about $2,500 – $4,000 for their advisory services. Learn whether a VA benefits adviser could help you.
Financial planners received specialized education and accreditation as professionals to advise families on their finances and retirement. They provide significant assistance for families in preparing financially for long term care including the creating of specialized accounts and trusts. They typically work with middle and upper income level individuals and may not have much specific knowledge of local aging programs and services for low income families. They focus on a range of financial products to preserve wealth and can be pretty expensive. They will charge either by the hour or based on the size of the client’s net wealth.
Elder Law Attorneys
Topping off our list of professional service providers that can help families prepare and qualify for elder care benefits, elder law attorneys are not a specific type of lawyer. Rather, the term loosely applies to legal professionals from a variety of specializations, such as tax, estate planning, wills, trusts, probate law, Medicaid planning, and administrative appeals. Because lawyers charge their client for services, you can be sure that they are working in your best interest. Attorneys can be very help in cases where an elder was wrongly denied coverage or blocked from VA benefits. The drawback, of course, is that the cost of legal advice and services can be very high, ranging from a low of $150 / hour to over $400 / hour.
Planning for later life stages can be challenging but the benefits are clear for families. We hope that this list of the types of professional resources available to help you plan will enable you get started. Please feel to let us know about your experiences or any types of planners that we missed in the comments.
All of my books, 35 so far, come from experience. My recent work focuses on caregiving and grief healing. In 2007 four family members died: my elder daughter (mother of our twin grandchildren), father-in-law, brother, and the twin’s father. As I have often done, I turned to writing for comfort and understanding. Eight grief resources came from this decision and you may learn more about them on harriethodgson.com.
I turned to writing for comfort and understanding
Life was calm until my husband’s aorta dissected in 2013. He had three emergency operations. During the last one he suffered a spinal stroke and it paralyzed his legs. After being hospitalized for eight months he was dismissed to my care. When my husband came home he was frail, tired, and spent much of his time in bed.
I turned to writing again for comfort and this led to The Family Caregiver’s Guide and Affirmations for Family Caregivers, both slated for fall release. Writing helped me and I think these books will help you. For like you, I walk the caregiving walk each day. WriteLife in Omaha, Nebraska is publishing my Family Caregiving Series. The third book, The FamilyCaregiver’s Journal, will be released in the spring of 2016. Please watch for these resources.
Wondering about the caregiving books Harriet’s already published?
by Carolyn A. Brent is an inexpensive must read. Carolyn explains her caregiving story as she took care of her father with no one to help her. This book is passionate as if offers guidance and support to caregivers and those who may become caregivers. Overall, this book is a valuable resource that is highly recommended for caregivers.
by Martin E.P Seligman is a very good read. This book demonstrates the best way you can create your happiness by focusing on positivity and strengths. Throughout this book, there are exercises that will prepare you to live your life at it’s full potential. This book is worth reading!
by Derek Doepker is a pleasurable book that will motivate you to think positive. With Derek’s amazing writing style, he will make you feel good about yourself even during your downfalls and hardships. This book is definitely passionate and inspiring!
by Panache Desai is a book you will not put down. This book will change your life as it is written from the heart with love and care. Panache details throughout this book that it takes 33 days to discover who you truly are. While reading this book, you can defeat your fears, negative emotions, and doubts. This amazing book is highly recommended!
by Richard Carlson will help you get through the day as you deal with others. This book will direct you to lead a calm and stressless life. Richard also reminds readers to live in the present moment. This amazing book that offers advice is recommended to everyone!
by Julie Kuebelbeck is a short read that is comforting and charming. This book encourages caregivers to care for themselves as they care for their loved ones. Readers will be able to cope with stress and heal while grieving. You will not regret reading this book!
This week, from February 22-28 is National Eating Disorder Awareness Week.
Eating disorders can affect anyone regardless of gender, race, age, or weight. Eating disorders are also some of the most commonly diagnosed illnesses in America today. Below are some resources that put a spotlight on bulimia, anorexia, and other disorders and help those, as well as surrounding family members, find the treatment and support that is needed.
This organization is one of the largest national organizations America that supports ongoing research on eating disorders while also giving families tools to care for loved ones with eating disorders. It also is the organization sponsoring the National Eating Disorder Awareness Week and has stories on when individuals found out they had an eating disorder. Likewise, they proudly feature a great website called Proud2BMe that promotes positive body image, and healthy attitudes for young teens.
This is a non-profit organization that specializes in connecting individuals with eating disorders to regional treatment centers around their area. It is a succinct and well-regarded resource used by clinicians, patients, and researchers alike.
Families Empowered and Supporting Treatment of Eating Disorders (aka F.E.A.S.T) is an international organization for caregivers/parents of eating disorder patients. F.E.A.S.T. This organization advocates for caregivers by providing information and mutual support, promoting evidence-based treatment, and advocating for research and education to reduce the suffering associated with eating disorders
This is an organization dedicated to helping parents find treatment and therapy for their children recovering from eating disorders. It features a small online community where blog post, tips, and family stories are shared.
This website is specifically dedicated to providing information in a comprehensive guide specifically for the eating disorder Bulimia Nervosa. It explains in an easy-to-use, yet concise format what bulimia is, how to screen for it, and how to treat it once diagnosed.
This blog focuses on the start to finish of a young woman’s journey recovering from the eating disorder Bulimia Nervosa. She offers her own Recovery Program as well as unique articles. One topic, in particular, focuses on bulimia in older women and why it does not garner as much attention as it should. She also features an online support group as well as interactive videos.
This up-incoming website is committed to educating the public about males with eating disorders. It highlights important, and engaging tidbits on this issue such as how “1 in 4 males have eating disorders.”
Ehlers-Danlos Syndrome is a group of inherited disorders that mostly affect the skin, joints, and blood vessels. The most common types of EDS includes the Classical Type, Hypermobility Type and the Vascular Type, also known as VEDS or Type IV. The Vascular Type Ehlers-Danlos Syndrome is the most severe type of EDS, it makes the blood vessels and organs fragile, leading to easy bruising and rupture. Symptoms of VEDS includes stretchy skin, thin skin, thin lips, small chin, thin nose, large eyes and joint dislocation.There is no cure yet for EDS, but there are treatments that have been known to be very helpful.
Here is a list of sources that provides useful information about VEDS and other types of Ehlers-Danlos syndrome.
Please note that this isn’t an official endorsement and we’re not necessarily affiliated with these organizations. Is there an organization or resource caregivers should know about that isn’t on the list? Let us know.
This is a non for profit organization established by EDS patients and family members to help improve the quality of life for people who have EDS and raise awareness through research, support, education and advocacy. Visit this site for information on types/causes/ syndrome of EDS, raising funds for a cure and raising awareness. The site also has a gift store which provides EDS awareness bracelets, EDS wallet medical cards, designer memorial pins, care buttons and information packets for educators.
This is the place to go for visual supported information about EDS. The site provides information, awareness, guidance and support for EDS patients, families, general public and medical community. In addition to advocacy, assistant with medical crisis, navigating the medical system, networking and fund raising for EDS research projects. There is also a helpline for an emergency crisis advocate on the website.
For quick answers to your Frequently Asked Questions about EDS, this is the site to visit. EDNF provides answers to questions such as how one gets EDS, the meaning of “mosaic” or “mosaicism”, whether or not to get genetic counselling, how EDS affects one’s lifestyle, sleep problems and so on. The site also has an helpline and provides information about Ritter Rules. Named after actor John Ritter, who died of a thoracic aortic dissection, Ritter Rules are life-saving reminders to recognize, treat and prevents a deadly tear in the large artery that carries blood away from the heart.
The Caregiver Space is here to support caregivers, but we’re not the only ones here to help! Here some of the books our community has enjoyed. Please note that this isn’t an official endorsement and we’re not necessarily affiliated with these authors.
Is there a book caregivers should know about that isn’t on the list? Let us know.
The Caregiver Space is here to support caregivers, but we’re not the only ones here to help! Here some of the books our community has enjoyed. Please note that this isn’t an official endorsement and we’re not necessarily affiliated with these authors.
Is there a book caregivers should know about that isn’t on the list? Let us know.
The Caregiver Space is here to support caregivers, but we’re not the only organization that’s here to help! Here are resources our community has found helpful. Please note that this isn’t an official endorsement and we’re not affiliated with these organizations.
Is there an organization or resource that’s helped you that isn’t on the list? Let us know.
Guide to US Social Security benefits
The Official Social Security Website provides information on the benefits that people with disabilities can receive and how to apply for them. The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.
State-by-state guide for family caregivers
The Family Care Navigator helps family caregivers locate public, nonprofit, and private programs and services nearest their loved one—living at home or in a residential facility. Resources include government health and disability programs, legal resources, disease-specific organizations and more. Caregiving is challenging, but there are resources to help. This list is compiled by the Family Caregiver Alliance.
US Census data on disability
Healthy People 2020 focuses on promoting the health and well-being of people with disabilities. The U.S. Census 2000 counted 49.7 million people with some type of long-lasting condition or disability.1 An individual can get a disabling impairment or chronic condition at any point in life. Disability is part of human life, and an impairment or condition does not define individuals, their health, or their talents and abilities.
US Housing guide
The Disability.org’s Guide to Housing has information about government agencies and organizations that can help you find an affordable place to live. You’ll also find information about rental assistance programs, assisted living facilities and modifying your home to make it accessible.
A guide to keeping your home for the newly disabled
Treatments for patients with chronic illnesses make up more than 75 percent of the nation’s annual medical spending. Unfortunately, often, the financial burden placed on patients is too great, and they aren’t able to keep their homes.The Guide to Keeping Your Home Through Debilitating Disease is a resource guide by Mortgage Calculator that provides those suffering with a debilitating disease with the information they need to ensure they’re able to keep their home as they seek and receive treatment.
When one discovers that Medicare does not cover non-medical expenses such as home care for seniors and only covers up to a limited amount of time in a nursing home, it is common to see what other financial assistance programs are available. People will often think of Medicaid next, perhaps due to its similar sounding name. While Medicaid can be helpful and does cover some non-medical long term care expenses, the federal assistance program for low income elders and the disabled can, at first, appear complex and confusing.
The work of determining whether Medicaid may be an option that can help typically falls to the family caregivers. Among all of the other stresses of care giving, figuring out Medicaid should not be one of them. This post aims to clarify the large assistance program and offer a plain language explanation of the benefits available. Of course, for those interested in researching further beyond this basic primer, there are links at the end and throughout to sites where more information is found.
How Is Medicaid Structured
Image by Ben Smith
Medicaid is actually the name for several programs. Adding to the complexity, every state has different names for their versions of the Medicaid programs. Federal and state moneys are made available to state programs to use according to program guidelines. Medicaid programs offer medical care and support services (non-medical care) for those who qualify. Medicaid pays nearly all of the costs of long term care and support for those who successfully apply and fall within the criteria.
Medicaid offers long term care benefits both in an institutional setting and through its Home and Community Based Services. Also called Medicaid Waivers, Home and Community Based Services are designed to help people afford to age at home and avoid having to live in a nursing home. While the benefits from Medicaid that provide nursing home care are considered entitlements, which are required to be provided to all who met the qualifications, Medicaid Waivers, in contrast, are limited by the funding allocated and often have long wait times for benefits to begin.
Medicaid Waivers can be directed towards the cost of home care, assisted living, adult day care, home modifications, or home medical equipment. One Medicaid Waiver is referred to generally as “Cash & Counseling.” Available in most states, Cash & Counseling offers qualifying individuals the choice to determine how best to spend the funds available for their care. Under these Waivers, it is possible to hire a family member as a home care provider.
Qualifications for Medicaid
Medicaid is specifically for low income seniors and disabled individuals who cannot care for themselves. The eligibility requirements vary by state and which program or waiver one is applying for. There are both financial and medical criteria that must be met.
Broadly speaking, under the medical requirements, if the person is not able to care for him or herself, they qualify. The Activities of Daily Living is a list of everyday tasks that program administrators use to determine whether and how much care a person needs.
In order to qualify financially, an applicant must meet both an income and a resource or asset limit. The numbers vary in each state, of course, and states take two different paths in how they set their financial requirements for Medicaid.
So called ‘Income Cap’ states establish a cap on the income that the recipient can make at no more than three times the amount of the Supplemental Security Income monthly disbursements, while ‘Medically Needy’ states look at whether the individual can afford their care given how much income they have. Medically Needy states require the recipient to ‘spend down’ their income until they reach a set amount, at which point, Medicaid covers the rest. Find out which type of state you live in.
During the Medicaid application process, staff will examine past gifts or ‘transfers’ from the applicant to members of their family or others, so it is not advisable to simply gift away money to reach the financial limits. Instead, if the applicant is a little over the limits, consider working with a Medicaid planner who can help families to structure their resources and prepare their application. In addition, local Area Agencies on Aging (AAA) specialize in helping elders to understand and apply for benefits for free. Search for your local AAA.
How to Apply for Medicaid
You can make an application as well as get additional information in your state Medicaid office or on their website. For a list of the Medicaid offices, go to this page. Applications take between a month and a half to three months to be processed, depending on whether there’s a disability that needs to be assessed.
This mesothelioma support community connects mesothelioma patients and their caregivers to free patient resources, helps navigate treatment and financial options, and has special sections for caregivers and veterans.