I Feel Your Pain
Crisis is upon you… A loved one is fighting for their life. So many people may want to help, but they don’t know what to do. Understanding the emotional volatility of a caregiver and their family is a good starting place.
The Human Side of Caregiving
Taking care of someone you love who is dealing with a life-and-death health battle may be the single biggest challenge you face in life. Not only do you have to stretch your own life in a hundred different ways, but you’re also losing the support of someone who was once there for you if that person is a close family member or spouse. Not only are you confronting your loved one’s fears about pain, death and dying, but you are confronting your own. You’re exhausted and find yourself going blank when a doctor, nurse or health care professional is speaking to you. You are unable to set limits on how much time you spend on your loved one’s health problems.
Your emotional swings are as manic as theirs. Chronically sleep-deprived, you snap at your family, forget to care for your dog or cat, lose your car keys or glasses, and even forget why you went into a room when you get there! You feel totally responsible, guilty, embarrassed at your own fears and often are not able to articulate this to anyone. You may even feel guilty for being healthy and neglect your own health! You stop going to the health club. Your job begins to suffer. You begin to withdraw socially, never having the energy or down time for fun. You forget to laugh because nothing is funny anymore.
Unless someone has gone through a sudden life-and-death health battle themselves or with a family member they do not understand what you are feeling. You stop sharing your challenges because you feel that no one wants to hear your problems all the time and your life is consumed with challenges every minute of every day so you have nothing else to share. You may even create an invisible wall around yourself. Bottom line…you know you must keep going even as the problems mount.
Some caregivers are seen as a rock; the one everyone goes to and depends on, the one with answers and assurances. Others find themselves a puddle, incapable of doing more than being present in the room with the person who is battling for their life. Either way, as a caregiver you deal with the very real possibility that you may have to face the death of someone you deeply love and care for. Truth is, no one wants to confront life-threatening health conditions unless forced to!
Knowing how a caregiver feels is a starting point to being a supportive friend. Assure caregivers that you want to hear about their challenges. Encourage them to share. Be willing to step up if you know there is something you can do or if there are others you know who can help. Understanding how they feel is a first step in helping keep them emotionally healthy during this challenging journey with their loved one.
We Are Here to Serve
Here to Serve is a non-profit group is dedicated to making a difference in the lives of the terminally ill, their caregivers and their family.
More families are finding themselves in a situation where they are the only people who can give the proper care of family members with serious life-threatening conditions or old age.
However, the burdens caregivers face are are just as serious as the battle their loved ones are fighting.
When a family member is stricken with a fatal injury or illness, there’s rarely enough time to gather the resources of friends, family and the community for the ordeal. Here to Serve stands with caregivers to provide them with referrals to assistance programs and other organizations. By providing personalized assistance to each caregiver it serves, Here to Serve aims to help bear the burden that comes with helping an ill family member.
About Here to Serve’s Advisory Board Member Dr. Judith Sato, MD
Here to Serve is proud to have one of the nation’s top cancer doctors on its advisory board, Dr. Judith Sato. She not only brings medical knowledge, but first hand experience working with parents who face the difficult situation of caring for a child afflicted with the disease.
Not only is Dr. Sato a physician at one of the top cancer centers in the U.S., City of Hope in Duarte, Calif., but she’s director of its Musculoskeletal Tumor Program and a researcher and pediatric oncologist known around the country. A specialist in treating bone tumors and cancers found in body extremities, Dr. Sato helped to establish standards used worldwide in the treatment of childhood cancers.
Prior to working at City of Hope, Dr. Sato was clinical director and deputy head of the Division of Hematology/Oncology at Children’s Hospital Los Angeles. She lectures around the world and is author of numerous research papers.
Our Inspiration: Paul M. Alindog-Bouvier
Though cancer took his left arm, Paul M. Alindog-Bouvier is remembered by his friends for his enduring faith and for doing more with his right arm than most people with both arms.
Stricken with cancer for eight years, Paul would study and prepare for his classes and exams during his chemotherapy sessions. He did not allow his condition damage his spirit or keep him from taking part in sports, student government and music. His peers named him “Most Inspiring Student” in middle school and high school for his boundless optimism and involvement in his activities, despite his health.
Before his death, Paul was active in fundraising for the Camp Ronald McDonald House and the City of Hope. Just as important, Paul was a friend to Bryan M. Quintas, the son of Here to Serve CEO Katie Quintas who also endured his own diagnosis and treatment for cancer. Knowing Paul is a gift from God, and though he is gone, what we do at Here to Serve honors his memory.
Our Inspiration: Jessica Grace Mastan
A promising athlete, 12-year-old Jessica Grace Mastan was struck with a pain in her hip after falling during a soccer game. She was diagnosed with a rare and aggressive bone cancer, Ewing’s sarcoma.
The five months she spent in chemotherapy failed to treat her condition. She faced a decision that could save her life, but leave her crippled as well. Jessica was very active and involved in running, sprinting, swimming, basketball, soccer and dance. Despite the likely possibility that the surgery, which would remove half her pelvic bone, would end her career in sports, she bravely faced the surgery.
Despite the odds, Jessica set a record for recovering in 17 days. Doctors also told her it would take her a year to walk, but she again defied the odds and did it in six months.
Jessica no longer needed the ramp her family built to assist her and her father decided to tear it down. Urging her on to destroy it to take out her anger and frustration, Jessica told him that she wasn’t angry.
However, despite taking on the odds, Jessica passed in March 2010 at age 14 due to a massive stroke. Her refusal to give in to cancer is an inspiration to all of us at Here to Serve
Caring for the Caregiver
In situations where one deals with a seriously ill family member, there’s rarely any discussion of their own well-being during the ordeal. It’s understandable. With the challenges an ill family member faces, caregivers see any inconvenience as small and insignificant.
However, there is a personal and emotional toll for that kind of personal and around the clock attention. The Family Caregiver Alliance found 90% of 500 caregivers describing the ordeal as frustrating, draining, and painful. Other studies found that more than half of those caring for a family member felt they didn’t have enough time for themselves and do not get enough sleep. Reports of depression and burnout are also not uncommon. Understandably, half of the caregivers in a study reported their own health deteriorated.
Finally, the mortality of caregivers were 63 percent greater than others — with some of them dying before the ill family members they were caring for.
Taking advantage of the services Here to Serve offers can not only assist to bring back some balance to a caregiver’s life, but can possibly ensure that the caregiver can continue to be there for their loved ones.
Why We Serve
Though the explosion of entertainment, smartphones and internet access brings convenience and options only dreamed of only 10 years ago, it’s also disconnected us from our neighbors and community that would have, in the past, helped in times of need. The journey a family must take when their child experiences a critical illness is often overlooked, yet it can make or break you. Research organizations searching for cures and hospitals treating critically-ill kids are plentiful and well-funded. But, what happens if a family makes a dollar or more than government support programs and nonprofit organizations will allow? Many working-class families live on the edge just making ends meet. They often rely on two incomes and pay for private insurance usually with high deductibles and co-pays. Their treatment options and hospital choices can be limited because they chose an affordable plan betting a medical crisis will not occur…then it happens! Where do they turn?…often to family and close friends. However, this can be a confusing and overwhelming labor of love for even the closest of family members and close friends. Lending them a helping hand is why we serve.
People feel they don’t know their neighbors well enough to ask for help. Likewise, when people they feel they should offer help, they don’t know what to say or if they should even offer their help.
Here to Serve helps to rebuild communities of caring and compassionate people, businesses and organizations with caregivers who may be new to the area, a single parent, part of a family that needs both incomes to survive or who do not speak English.
Disclaimer: All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.
EEOC Vows to Defend Employment Rights of Caregivers
In a public meeting, the U.S. Equal Employment Opportunity Commission heard experts testify as to the discrimination caregivers face in the workplace.
More than 40 percent of American workers have given care to a family member or friend in the last five years, and almost half will be in the position of caregiver in the next five years.
EEOC Commissioner Stuart J. Ishimaru said, “Employers should not make decisions based on stereotypes and presumptions about the competence and commitment of these workers. EEOC will vigorously enforce the anti-discrimination laws as they apply to pregnant women and caregivers.”
About Here to Serve’s Advisory Board Member Melanie Sauer-Beegle
As director of business operations for Southern California Public Radio, an affiliate of National Public Radio, and consultant to non-profit children’s and theater groups, Melanie Sauer-Beegle’s financial expertise is welcomed on Here to Serve’s advisory board.
Sauer-Beegle’s background is an eclectic mix of education, management and non-profit causes. Though her bachelor’s degree is in accounting, she also holds a master’s degree in education administration and human development and was employed by the University of Southern California and Scripps College. Melanie has blended her background in education, accounting and finance by teaching online courses in Finance and Accounting for the MBA program at St. Georges University in Grenada, West Indies. She also serves on regional associations and boards and speaks at national conferences.
She received an MBA in finance strategy at the Peter F. Drucker Graduate School of Management — while attending the program, the college recruited her as associate director for its executive management program.
Caring for Ill Family Members a Source of Anxiety for Women
A Forbes news item found that 66 percent of both black and white women are worried about caring for sick family members.
Though Hispanics were not included in the study, a 2008 report found that one-third of Hispanic households had at least one caregiver under its roof, 75 percent of which were women.
The reliance
on female family members comes while Congress fails to renew legislation that supports caregivers.
Caregivers who care for family members take home less pay from their jobs, are removed from advancement, or have to quit. This also means a hardship for the family, without Social Security and retirement income.
About Here to Serve’s secretary, Shirley Johnson
As chief nursing and patient services officer at one of the country’s top 10 cancer centers (City of Hope in Duarte, Calif.), Here to Serve’s secretary Shirley Johnson has seen first hand the stress that comes from caregiving. With over 30 years of experience in the healthcare field, Shirley was Executive Director of the Siteman
Cancer Center at Barnes Jewish Hospital and Washington University School of Medicine in St. Louis, Missouri.
She’s seen the challenges caregivers overcome each day at her job, assisting their needs and patient’s needs when faced with life-threatening crises. Shirley joined the Here to Serve board to develop support and resources because of the difference the aid the organization can give to caregivers and patients.
Our Inspiration: Silvio C. Quintas
After taking a round of antibiotics, doctors found that Silvio’s white blood count was still high. After more tests, they discovered Silvio C. Quintas had leukemia.
However, it was a highly treatable form of the disease and Silvio ultimately beat it. Katie Quintas, Silvio’s wife and the future CEO of Here to Serve, found a
cancer specialist (Dr. Ronald Paquette) who prescribed a state of the art treatment that battled Silvio’s cancer. In fact, the Gleevec drug therapy used on Silvio wasn’t available a few years earlier.
While Silvio’s cancer was put into remission by Dr. Paquette’s expertise, the course was still rough and at times painful. Silvio was subjected to bone marrow biopsies without general anesthesia, with the nausea and fatigue that comes with cancer treatments. Complicating the matter was a diagnosis of Parkinson’s Disease Silvio received a year earlier.
Katie, suddenly finding herself in the position of needing to care for her husband, found the strength to hold her household together during this trying time. However, her son was also diagnosed with cancer at about the same time. Though both survived, the situation went from difficult to monumental.
Our Inspiration: Bryan M. Quintas
Future Here to Serve CEO Katie Quintas discovered her son, Bryan, was also diagnosed with cancer. This diagnosis came a few months after she found a doctor to treat the highly survivable leukemia found in her husband, Silvio.
While trying to diagnose a pain in his knees at City of Hope, the oncologist told him
He should pray for cancer, because the alternative was even worse. Ultimately, after several weeks of testing, the diagnosis was a stage 4 large B-cell non-Hodgkins lymphoma.
For a year, Bryan’s treatment at City of Hope was under the supervision of Dr. Judith Sato (now on the Advisory Board of Here to Serve) — but it was a very long year. Complications at the time included nausea, a collapsed lung, fever, fatigue, throat and mouth sores as well as changes in his personality. A blood-borne infection, or sepsis, nearly killed him. There was also the possibility the chemotherapy would take his life.
All the while, Katie cared for Bryan and her husband Silvio as well, despite the two of them being treated in separate hospitals on opposite ends of Los Angeles — while holding her household together and working full time.
Bryan and Silvio pulled through. However, Bryan’s friend, Paul, died and his grandmother (Katie’s mother) also passed from cancer during this time.
While most people would have been left drained in every sense of the word, the experience of suddenly finding herself thrust into the role of caregiver inspired Katie to form Here to Serve.
Caregivers Need Support Groups of their Own
A study by the American Psychological Association found that caregivers who looked after critically and chronically ill family members were more likely to report higher levels of stress, poor health and are more likely to take part in unhealthy behaviors to alleviate their stress than the rest of the public.
However, the report also foundthat caregivers who have outside support — like Here to Serve — are less likely to succumb to the pressure of their situation.
“The caregiver group seems to be much, much better when they are plugged into some sort of a support system,” Katherine Nordal, who specializes in the treatment of stress disorders, told Voice of America. “They demonstrate less isolation, less loneliness, better coping strategies, less depression, less irritability and less risk of chronic disease when they are plugged into those family and friends and other sorts of community-based support systems.”
http://www.voanews.com/english/news/usa/Study-Caregivers-Under-Considerable-Stress-149671235.html
About Here to Serve’s founder, Kathleen Quintas
Here to Serve’s Kathleen Quintas was inspired to found her organization from her own experience with caregiving.
While holding a full time job, Kathleen’s son was diagnosed with stage 4 non-Hodgkin’s Lymphoma while her husband was six months into his treatment for leukemia. To make an impossible situation even worse, they were being treated across town for each other her son at City of Hope in Duarte, Calif. and her husband at UCLA Medical Center in Westwood, Calif. She learned firsthand the intense emotional, spiritual and mental stress that takes place when caregiving.
While nothing prepared Kathleen for her role as a caregiver, her experience as a caregiver gave her the necessary tools to help others in the similar situations of caring for a child or spouse and helped her establish Here to Serve. Her career in marketing, communication and fundraising laid the groundwork for the organization, and she also handled the philanthropic and volunteer initiatives of a California nonprofit serving children and families in crisis with social and mental health services.
5 Reasons Why Casino Night Is Better Than A Las Vegas Weekend!
- You don’t have to drive 4 to 5 hours to try your luck. Do it here at Arcadia! It’s not uncommon for a drive to Vegas to take as long as seven hours and the return trip as long as 11 hours. After a busy work week you don’t want to be fighting traffic in the desert or airport travel and all it entails.
- Have a first-class casino experience.Poker, Craps, Roulette, Blackjack and Bingo…bring your friends! Spice up the evening with delicious Mexican cuisine and top-shelf wine, beer, champagne and Jarritos. Dance the night away with our Classic Rock DJ. The magic continues with our incredible magician who will keep you guessing throughout the evening! Come to a party that won’t rock your wallet at only $60 per person, but will keep giving back in so many other ways!
- Silent Auction: Gives and gains. Charity and happiness. Proverbs 11:24 “One person gives freely, yet gains even more.” How would it feel to have a night of gaming and leave not only happy, win or lose, but feeling it was an evening well spent!? Support an incredible charity that helps families with a child in medical crisis AND have a night of fun, food, games, drinks, prizes and a few many great deals at the auction!
- Meet the big names behind Here to Serve.We bet you can’t run into a Wells Fargo CEO or the President of Paramount Pictures every day. Here to Serve has long been supported by warm-hearted entrepreneurs, corporates and media. You don’t want miss this networking opportunity.
- The most important reason:In memory of Here to Serve’s Co-Founder Silvio Quintas, Here to Serve is holding this event. Silvio was a tireless supporter of Here to Serve who was wholly committed to the mission of serving families with a child in medical crisis. Please help us honor his memory and commitment to Here to Serve by attending. Here is a link to the recent NBC TV news segment done two months ago that shares Silvio’s passion for Here to Serve: http://bit.ly/NBCTVreport.
To register, click here: http://bit.ly/casinonightregistration
Unable to attend? Donate in Silvio’s memory: http://bit.ly/h2sdonate.
Interested in being a sponsor? Go to: http://bit.ly/casinonightsponsorship.
If you have donations to the Silent Auction, click here: http://bit.ly/auctiondonationform.
Caroline and Her Family’s Battle for Life
When Caroline was diagnosed with stage 4 neuroblastoma, she was just three-years old. Her diagnosis was heart-stopping because of the aggressive type of cancer she has.
The Family’s battle for life
She has gone through multiple rounds of chemotherapy, a surgery to remove the tumor on her adrenal gland, a stem cell transplant, radiation therapy, and immunotherapy treatments since November, 2013. Overwhelming as the experience is, Caroline stays strong and positive. She considers all the medical procedures as a life adventure and even determined her future career goal…to be a surgeon when she grows up! Having been surrounded by her doctor and nurse friends, Caroline decided she wanted to be one of them. We believe Doctor Caroline will be the most accomplished surgeon!
Standing with Caroline throughout this battle, is her family who spares no effort to support her and pray for her. Mom Cheryl lovingly recorded Caroline’s journey on her blog illustrating, between lines, how brave and determined her little girl is. But still, parent worries can be sensed. This battle takes time and is marked by continuous ups and downs.
Now there is one more person who roots for Caroline, her baby sister Chloe. Being a big sister is a responsibility Caroline gladly takes on. Would we expect any less of joyful, indomitable Caroline?! She is an inspiration to all!
Here to Serve has been and will continue to be with Caroline and her family. We will continue to help with the Family’s battle for life, with all it’s challenges. We hope you are able to join us and help them through this battle!
All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.
Understanding the Caregiver
I Feel Your Pain…Understanding the Emotional Challenges of Caregivers
Crisis is upon you… A loved one is fighting for their life. So many people may want to help, but they don’t know what to do. Understanding the emotional volatility of a caregiver and their family is a good starting place.
The Human Side of Caregiving
Taking care of someone you love who is dealing with a life-and-death health battle may be the single biggest challenge you face in life. Not only do you have to stretch your own life in a hundred different ways, but you’re also losing the support of someone who was once there for you if that person is a close family member or spouse. Not only are you confronting your loved one’s fears about pain, death and dying, but you are confronting your own. You’re exhausted and find yourself going blank when a doctor, nurse or health care professional is speaking to you. You are unable to set limits on how much time you spend on your loved one’s health problems.
Your emotional swings are as manic as theirs. Chronically sleep-deprived, you snap at your family, forget to care for your dog or cat, lose your car keys or glasses, and even forget why you went into a room when you get there! You feel totally responsible, guilty, embarrassed at your own fears and often are not able to articulate this to anyone. You may even feel guilty for being healthy and neglect your own health! You stop going to the health club. Your job begins to suffer. You begin to withdraw socially, never having the energy or down time for fun. You forget to laugh because nothing is funny anymore.
Unless someone has gone through a sudden life-and-death health battle themselves or with a family member they do not understand what you are feeling. You stop sharing your challenges because you feel that no one wants to hear your problems all the time and your life is consumed with challenges every minute of every day so you have nothing else to share. You may even create an invisible wall around yourself. Bottom line…you know you must keep going even as the problems mount.
Some caregivers are seen as a rock; the one everyone goes to and depends on, the one with answers and assurances. Others find themselves a puddle, incapable of doing more than being present in the room with the person who is battling for their life. Either way, as a caregiver you deal with the very real possibility that you may have to face the death of someone you deeply love and care for. Truth is, no one wants to confront life-threatening health conditions unless forced to!
Knowing how a caregiver feels is a starting point to being a supportive friend. Assure caregivers that you want to hear about their challenges. Encourage them to share. Be willing to step up if you know there is something you can do or if there are others you know who can help. Understanding how they feel is a first step in helping keep them emotionally healthy during this challenging journey with their loved one.
Big Names behind Here to Serve: Henry Jordan
When it comes to Here to Serve continuing to grow and serve more families, we can never emphasize enough the value of support that comes from caring entrepreneurs and corporations. Among those most influential who stand with Here to Serve is Henry Jordan, CEO and Chairman of the Board of Wells Fargo Capital Finance.
Henry’s friendship with the founders of Here to Serve dates back 40 years when Henry and Here to Serve’s Co-Founder Silvio Quintas were friends at La Salle High School. Their friendship flourished as the years went on.
When Katie and Silvio Quintas started Here to Serve, they shared their idea with Henry who gave them wise counsel and advice. He was inspired by a cause that would help families with children in medical crisis by creating a stable environment and providing practical help and useful medical recourses. Also as a friend to Quintas family, he knew about their own battle with terrible diseases including cancer and felt compelled to show support to this charity.
Both Wells Fargo Capital Finance and Henry’s family have been supporting Here to Serve financially. Henry himself serves on the Advisory Board. Busy as he has been, he involves himself in Here to Serve’s events and provides advice and support. He participated in Golf Tournaments the last two years and sponsored their Casino Night in memory of Silvio this month.
“If people are considering donations, I would have them spend a little time directly with Katie,” Henry suggested. Conversations with an insider always helps people better know the situations of people in need. In addition, Henry recommends referring to Here to Serve and GuideStar’s websites, as a good sources to get to know some of the families with children in medical crisis. GuideStar rates Here to Serve as a five-star nonprofit through reviews of the charity!
Caring for the Caregiver: 10 Tips When Providing Meals
The following is general information and may not apply for every situation. Please check with the recipient family or meal coordinator.
- Find out what the family normally eats and use that to guide your decision on what to offer.
- If possible, offer the family a choice of meals. Try to offer variety by checking what other meals have been provided within a few days of the time you would like to take a meal.
- Find out if any family members have any food sensitivities or allergies (lactose intolerant, peanut allergies, gluten intolerant etc.)
- Arrange a time to deliver the meal and be on time. Call if there is a change in plans.
- Use disposable containers to make cleanup easier. This will also eliminate the need for the family to keep track of and return the container. If you must use a non-disposable container and would like them returned, please label with your name and phone number. Or when you arrive see if you can transfer the food to their serving dishes. If not, follow up with the family a week or more later making the effort to pick up the containers versus having the family find time to return them Include disposable utensils (forks, knives, cups, etc.) when making deliveries outside the home, to a hospital or other facility.
- Label the containers with the contents, date prepared, and your name.
- Give clear written instructions for any preparation that may need to be done (heating times/temps, etc.). This can be on an attached piece of paper or written directly on a disposable container or foil covering.
- It’s usually a great time to visit briefly with the family when delivering a meal. Unless specifically asked to stay longer, it is usually best to keep your visit short. If the family is not ready for company, only stay as long as necessary. Please respect the family’s needs and wishes.
- If you would like to provide a meal without cooking it yourself, takeout food from a restaurant is also an option. Again check food restrictions and allergies to be sure the food is prepared properly.
- Gift certificates that deliver can also help fill in any gaps that may occur. The recipient can choose the meal and arrange to have it delivered when it is convenient.
Use these tips for caring for the caregiver to help out friends and family!
Here are tips to help prove care for the caregivers
All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.
