Originally Posted on 03/07/2016 by AARP http://blog.aarp.org/2016/03/07/the-care-act-helping-family-caregivers-from-hospital-to-home/
In preparing Mom’s medication, my 90-year-old Pop would fill a syringe using the light of the kitchen window to see if the dosage was correct. He set up the nebulizer on a table with handwritten step-by-step instructions to remind him how to operate it. Today, millions of family caregivers like Pop perform complex medical tasks that at one time would have been administered only by medical professionals.
21 states and counting
Two years ago, AARP proposed the idea of the CARE (Caregiver, Advise, Record and Enable) Act to support the 40 million family caregivers in America who are “home alone” with little to no training on how to care for their loved ones safely at home. Last Friday, Wyoming became the 20th state to enact a law that would:
Bottom line: The CARE Act helps family caregivers from the moment their loved ones go into the hospital to when they return home.
Like many of the wonderful legislative sponsors across the states, Rep. Elaine Harvey (R-Wyo.) was a family caregiver; she cared for four parents, two sisters and a great uncle. Last year when we met, Elaine told me and Tim Summers, AARP Wyoming state director, that it had been some time since she championed a personal piece of legislation, but the CARE Act was so important, she would introduce it. Not only did she keep her promise, but she made the bill stronger.
Family caregiving is already physically and emotionally draining without the stress of figuring out complicated medical tasks on your own.
We’re still fighting
AARP continues to fight for this commonsense, no-cost solution because too many family caregivers are without the basic support they need. Charity from Kansas recently shared:
“My grandmother suffered a stroke, several years ago. And, right now, I’m with her daily — helping her get up and dressed in the morning, and taking care of her needs until I go to work. If she goes back into the hospital, I want to know exactly what I need to do, to take care of her — when she comes home. I don’t want her to end up back in the hospital — or in a nursing home. And, the CARE Act would help prevent that from happening.”
Right now, legislatures are in the process of considering the CARE Act this session in the District of Columbia and 15 states: Alaska, Hawaii, Iowa, Kansas, Kentucky, Louisiana, Maryland,Massachusetts, Michigan, Minnesota, Missouri, Nebraska, Pennsylvania, Washington andWisconsin. And, in the U.S. Virgin Islands, the bill is awaiting Gov. Kenneth Mapp’s (I) signature.
Where does your state stand?
If you’re a family caregiver, you’re not alone.
Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.
Follow Elaine on Twitter: @RoamTheDomes
Dean Primavera, distinguished faculty, honored guests, proud parents and family and my newly graduated colleagues…
I want to begin my guidance to you this afternoon by reminding all of you of just how unique and wonderful you all are. You see many people care capable to feel empathy for someone given the right circumstances. It is the rare few that cannot feel something when the news is filled with stories of the survivors of an earthquake or a picture of a five year old stunned by the events of war.
But it is the rare soul that can mobilize their empathy and compassionate nature into the action we call caregiving; and even fewer that take it on as their life’s work. Serving your fellow man, woman or child is the highest form of generosity I know and you have all chosen this Path.
So I would like to offer you three steps to take to ensure that you stay connected to the beautiful mission that you have accepted:
First: Create a place for stillness in your daily life.
Professional caregivers are perpetual doers. The only way to balance continuous doing is to stop and be still. The goal of stillness is to free you from the endless loop of thoughts in your head and encourage you to be more in your body. Simple exercises such as mindful-breathing can offer you an opportunity to pause and rest in a peaceful place. The answer to many of the questions that you will be asking yourself over the next twenty-five years lie in that wonderful silent, still place. Find the simple things in life that can offer you a momentary rest from the noise in your head.
Second: Allow others to care for you.
Suggesting to a professional caregiver that they may need to be cared for is often offensive to them. Caregivers see themselves as strong, indispensable and indestructible. When I suggest that someone may need caring for, it is often thought that I am suggesting that they are weak or even damaged. Self-care is an act of generosity not selfishness. Self-care allows you to stay available to serve. Taking good care of yourself keeps you connected to your compassionate nature longer and in a more authentic manner.
I often hear professional caregivers explain to me how they take care of themselves and indeed, that is the issue and my point. Taking care of yourself does not let you receive care. Allowing yourself to receive is vital. It is in the receiving of care from another, either through friendship, love, massage, reiki, or delegation of responsibility, that our spirits are renewed, reconnected and refreshed.
Finally: Develop you emotional intelligence.
We are at a time in our industry and professions where knowledge and skills are not enough. Gone are the days of accepting that someone is great at what they do but no one can stand to work with them. The days condoning of ego-dominated behaviors are numbered.
Emotional intelligence has not been stressed in healthcare largely due to the fact that we have been trying to figure out a way to survive. We have been trying to find a model of care and understand how we are going to pay for that model since 1984 with the break from the fee-for-service structure. We are now fairly clear on a model of care and how it will be financed. It is time to turn our attention to mastering the four skills of emotional intelligence: self-awareness, self-management, social-awareness and relationship-management. We need to master these behavioral expectations in the same manner that our non-healthcare professional colleagues are held accountable to do.
Solid emotional intelligence skills are tools for reducing the risk of compassion fatigue and reducing the prevalence of bullying and incivility in our professions. If we do not redirect our attention to these essential “soft-skills”, we will have no chance of creating a true, interdisciplinary model of care that is patient-centered and humane. We will continue to lose the best of us to venues of practice other than the bedside where we need the best most.
In closing, may you never forget that the Universe only asked a very few of us to devote our lives to the service of others…and you said yes. Blessings and congratulations Class of 2016.
Listen closely to what can happen when caregivers are respected, heard and treated as team members and not employees…Fabulous!
Medicare is national health insurance that all Americans receive when they turn 65. Disabled people who are under 65 can also enroll in Medicare without paying premiums. Medicare is usually not helpful to those looking for a solution to long term care needs.
Medicare can cover short-term rehab stays at a nursing home, for example, after a hospitalization. It can also pay for rehab and therapy at home for a limited period of time and when prescribed by a doctor.
But it’s vitally important to recognize that Medicare does not pay for custodial care. Medicare should primarily be considered health insurance. This means Medicare does not pay for the following types of senior care:
For more information about Medicare, see http://www.medicare.gov.
Medicaid is the foremost government assistance program paying for long term care for people who can’t afford it on their own. It is administered cooperatively by the federal government and states. While the majority of its funding comes from the federal government, each state has some discretion in its individual rules, regulations and eligibility requirements.
Medicaid is the safety net for Americans who need care that they cannot afford privately. Like Medicare, Medicaid acts as health insurance. But unlike Medicare, Medicaid can be used to pay for long term nursing home care in all states. Many states also allow their residents to use Medicaid to pay for assisted living communities or other alternatives to nursing homes such as in-home care.
Some states even offer a program through Medicaid called PACE (Program of All Inclusive Care for the Elderly), which covers all of the senior’s care and medical needs through one contracting agency, with the goal of allowing people who have traditionally gone to nursing homes to stay in the community (at home) with support.
Each state has its own guidelines, so you will need to contact a State Medical Assistance office for more details:
You may also want to speak with an elder law attorney who can help guide you through the nuances of a successful Medicaid application.
Veterans who are at least 65 years-old and who served during war time (though not necessarily in actual combat) may be eligible for financial assistance through the US Department of Veteran Affairs (VA) that can be used to help pay for care. Spouses, surviving spouses, and even other dependents of the veteran may be eligible for assistance in some cases as well.
There are three levels of VA benefits for wartime veterans and their dependents, which are based on the needs of the applicant.
Assistance from the VA is “means tested,” in other words, only people who are deemed genuinely in need will receive an award. It also means that the amount of the benefit is based on the applicant’s income, assets, and needs. Applicants whose countable incomes are over maximum thresholds (excluding the home they live in and the care they drive), will usually be denied. But in situations that are borderline it can’t hurt to apply, as decisions are largely made on a case by case basis.
Like Medicaid, VA benefits can be extraordinarily complex. For this reason you might also consider speaking with a Veteran Services Officer. Veteran Services Officers volunteer through the United States, frequently at hubs for veterans like American Legion halls Veteran of Foreign Wars (VFW) lodges.
To apply for VA health care or determine eligibility,
Medicaid, VA benefits, and to some extent, Medicare, are government programs that help pay for care for older people in the United States. But there are alternatives. Some families also explore reverse mortgages and life settlements to raise funds to pay for necessary care.
Our Senior Living Advisors are happy to discuss, at no cost, the financial aspect of care planning. They can talk you through the options, and even suggest local experts who can help you pursue financial aid options outlined in this article. Talk to an Advisor in your area today!
Originally featured in Women of Distinction Magazine: September 8, 2016
Q: A good deal of your coaching practice is centered on working with family caregivers. What are some of the challenges facing family caregivers today?
A: Their biggest challenge is to have a life of their own while caring full time for their loved one and not self-destruct in the process. I think it is so important to remember that in most cases, family caregivers never saw this responsibility coming. They didn’t go to school to learn how to be caregivers. They did not make a conscious decision to make a career in caregiving. They responded to a life-changing event, which usually involved a spouse, parent or child. They made the significant changes necessary to be fully present and care for that person. That is not only love and loyalty in action; it is the highest form of generosity. By in large, family caregivers go it alone. What community resources were available are now all but gone since the economic downturn of 2007. So my work with these clients is centered on finding ways to meet their self-care needs and in identifying ways to seek assistance. I am a huge proponent of the care model put forth by The Share the Care Organization. This not-for-profit organization conducts training programs to teach professional and family caregivers how to set up care circles. We usually have a group of friends and neighbors who would like to help but are not capable of rendering physical care. This care model focuses on what people can do. Perhaps you can help with marketing, lawn care, driving to doctor appointments, etc. Creating care circles allow others to help you and your loved one so that the responsibilities of your life do not become overwhelming.
Q: What is your approach to coaching?
A: My approach to coaching is to view my client as whole, competent and capable. I understand how challenging it can be to remain clear and authentic about ones goals and one self as you try to navigate your life. Responsibilities, setbacks and the demands of an adult life can overshadow a person’s understanding of the present and cloud his or her vision for the future. Our very human nature creates blind spots to options and solutions. My goal is to empower my client to access their own innate knowing and personal wisdom. I can support them as they explore where they are now, guide them in clarifying where they want to be, assist them in setting up a timeline, and support them efforts to attain their goals in a nonjudgmental manner.
Q: What is compassion fatigue?
A: It is a condition characterized by a gradual lessening of your ability to render empathic care over time. Those at risk for the development of compassion fatigue include: nurses, social workers, first responders, special education teachers, and the family caregivers of those with chronic illnesses. Symptoms include but are not limited to, a decrease in experiences of pleasure practicing a profession you once loved, a sense of relentless stress, anxiety over the thought of going to work, and a pervasive negative attitude that creeps into all areas of your life. Long term, this can have devastating effects on your work performance and relationships and life.
Q: How can you start a person along the process of recovery from compassion fatigue?
A: Caregivers have a difficult time with the idea of receiving care therefore, acknowledging that you may be experiencing compassion fatigue and seeking help is a healthy first step. Everyone’s journey to the development of the syndrome is unique so there is no such thing as one approach fits all. However, the biggest hurdle to get over is to embrace the fact that you must take just as good care of yourself as you do others. It is vital to approach caregiving from a place of fullness and not try to render care when you are fueling yourself from the fumes of your compassionate nature. The airline industry really gives the best advice. Put your own oxygen on first, and then help the other person. A big part of recovery is to incorporate an adequate rest and self-care regimen into your life. This adaptation should be seen as a treatment for compassion fatigue and as a vaccination against developing the syndrome again.
Q: Why do you recommend a regular mindful practice for caregivers?
A: People who are drawn to human services are perpetual doers. They start doing from the minute they wake up and don’t stop until they fall asleep. They only way to add a sense of balance to that approach to life is to incorporate regularly scheduled times when we are just still and breathing. Doers are always in their head thinking about what they need to do and whom they need to do it for. So taking time to just sit and breathe, so that you are more aware of being in your body rather than stuck in the endless loop of thinking, can offer a much needed break from perpetual doing.
Q: What inspired you to write your book; Rediscover the Joy of Being a Nurse?
A: As I was crisscrossing the country speaking and coaching at various nursing events, I was deeply saddened by the degree of personal pain these nurses were struggling with every day. I felt the need to try to offer some guidance to those who felt so disconnected from something that meant so much to them. The insight the book offers is not centered on anything that we learned in nursing school. Rather, it is focused on the development of three vital life skills: the ability to adapt, the ability to make and sustain relationships and the ability to be resilient. I believe that cultivating these three life skills can help nurses refocus their attention on themselves and what they need to have a content professional and personal life for the long term.
Q: What has been the most successful marketing strategy for you?
A: Developing my relationship within the social networks on LinkedIn. I have found LinkedIn to be the most professional and powerful networking medium. Everyone using this platform is serious and looking to connect with other serious individuals. Engaging on LinkedIn is a commitment of time and effort but the return on my investment has been worth it. Many of my most important opportunities have been offered to me through LinkedIn.
The goal is self-determination and a peaceful death
Life as a Young Sister
Captivated by stories of missionaries, Agnes left her family home in Skopje in 1928 at the age of 18 to join the Sisters of Loreto. “Be so kind to hear my sincere desire,” she humbly wrote to the Loreto Mother Superior. “I want to join your Society, so that one day I may become a missionary sister, and work for Jesus who died for us all.”
Needing to learn English first, the young postulant spent six weeks in Loreto Abbey in Dublin, Ireland. She set sail for India on December 1, 1928, to give her life to service.
Call within a Call
For years, Mother Teresa refused to talk about this seminal moment in her life. But worldwide interest in her “call within a call” would not diminish. Reluctantly, she spoke about it. “God was calling me to give up all and to surrender myself to him in the service of the poorest of the poor in the slums.”
The call happened on September 10, 1946, as she traveled by train from Calcutta to Darjeeling. Suddenly, a new mission presented itself. “To fail would have been to break the faith,” she said.
Relief for Calcutta’s Suffering
Mother Teresa opened wide the doors of mercy and charity for the poorest of the poor in Calcutta. It was her life’s calling—what she considered to be an order from God. Mother Teresa directed her Missionaries of Charity to serve “the hungry, the naked, the homeless, the crippled, the blind, the lepers, all those people who feel unwanted, unloved, uncared for throughout society, people who have become a burden to the society and are shunned by everyone.”
One of Mother Teresa’s deepest fears after she founded the Missionaries of Charity was that she or one of her sisters and brothers would do or say something to cause scandal or detract from the Order’s mission. In all likelihood this explains, at least in part, her reluctance to speak publicly of the interior locutions she had experienced for seven or eight months after the call within a call came on the train to Darjeeling.
Yet Teresa did cause scandal, although only after she’d been dead for a decade, and then only for a short time. In 2007, Come Be My Light, a book that collected many of her most personal and private correspondence, was published. It immediately caused sorrow and confusion in her admirers and a glee that bordered on what the Germans call schadenfreude, taking pleasure in another’s misfortune, in her detractors.
Her letters revealed that, except for one short period, Teresa had been afflicted with a deep sense of God’s absence for the last half-century of her life. Such was her unflagging dedication to the work she’d undertaken for God that most of the world was completely unsuspecting of her spiritual darkness.
On hearing the news, many Christians were confused. What did Teresa’s long stay in the spiritual wilderness mean? Was she a victim of depression? Had she lost faith in God? What gave her the inner strength to carry on even when she anguished over what she felt to be God’s abandonment of her?
Even Teresa’s closest companions in the Missionaries of Charity were bewildered. Never had she made any reference to the darkness except for an oblique reference that would’ve meant nothing to anyone but her confessors with whom she shared what she was going through. Four years before she died, she warned her sisters that “the Devil” is continuously on the prowl in order to “make you feel it is impossible that Jesus really loves you, is really cleaving to you. This is a danger for all of us.” None of them could have guessed that the remark was autobiographical.
For their part, Teresa’s detractors pointed to the revelations in Come Be My Light as evidence that Teresa was a faux-saint whose public displays of piety were hypocritical. Longtime critic Christopher Hitchens declared that the letters revealed Teresa to be a “confused old lady” who had “ceased to believe,” and whose service to others was nothing more than “part of an effort to still the misery within.” He also argued that the Catholic Church’s interpretation of Teresa’s time in the desert as a dark night of the soul was a perverse piece of marketing that sought to spin despair as faith.
A Soul in Anguish
There’s no sense in denying that Mother Teresa’s sojourn in the wilderness is disconcerting. If God can seem absent to a saint like her, what chance do the rest of us have to connect with God? It’s also quite probably true, given the nature of her work among the poorest of the poor, that at times Teresa felt psychologically depressed or burnt out. What normal person wouldn’t? But to conclude that the darkness was the result of depression, much less loss of faith, is to overlook its spiritual significance.
Psychological depression is me-centered; the depressive’s gaze is always directed inward. Teresa’s, on the other hand, was directed outward, to the God whose absence she so keenly felt. Depression renders a sufferer listless; Mother Teresa was always on the go, doing the work to which she felt God had called her. Moreover, dark periods don’t necessarily suggest a loss of faith. Instead, they are recognized in the Christian tradition as periods of great spiritual development.
Many Christian saints have recounted their own experiences of darkness in their relationships with God, but it was the sixteenth-century St. John of the Cross who wrote what’s still considered to be the best analysis of them. Not surprisingly, Mother Teresa knew his writings, and once remarked that even though John’s words made her “hunger for God,” they also expressed what for her was “the terrible feeling of being ‘unwanted’ by Him.”
For John of the Cross, the noche oscura or “dark night of the soul” is a forlorn feeling of being abandoned by God. “Both the sense and the spirit,” he writes, “as though under an immense and dark load, undergo such agony and pain that the soul would consider death a relief.” The soul suffers most from the conviction that “God has rejected it, and with abhorrence cast it into darkness.”
But what feels like abandonment is far from it. The painful sense of being rejected by God is actually a purgation of the senses and spirit that prepares the way for an “inflow of God into the soul.” There is no set time limit for a dark night of the soul, although most do not last as long as Mother Teresa’s did. Nor does the dark night mean that the sufferer has ceased to believe in God, although intense doubts can arise.
In one of her letters, Mother Teresa writes, “In my soul I feel just that terrible pain of loss—of God not wanting me—of God not being God—of God not really existing.”8 But the occasional dreadful thought that God may be a fiction wasn’t her primary torment.
Even if Teresa had never read John of the Cross’s description of the noche oscura, she would’ve had some idea of it from her namesake, St. Thérèse de Lisieux, the Little Flower, who likewise suffered from a sense of abandonment toward the end of her short life. Thérèse wrote that “God hides, is wrapped in darkness,” and she accounted for this by arguing that the love of Christ is so overwhelming that its fullness has to be withheld from mortals, a withdrawal that naturally causes suffering.
Mother Teresa’s suffering when God hid from her was intense. From first to last, her private correspondence to her confessors attests to that. Just a few passages, representative of the whole, convey something of the loneliness into which her sense of God’s absence drove her.
The longing for God is terribly painful and yet the darkness is becoming greater. What contradiction there is in my soul.
—The pain within is so great…Please ask Our Lady to be my Mother in this darkness.
The place of God in my soul is blank—There is no God in me.
In the darkness…Lord, my God, who am I that You should forsake me?…
The one You have thrown away as unwanted—unloved.
I call, I cling,
I want—and there is no One to answer—no One on
Whom I can clin—no, No One. Alone. The darkness is so dark—and I am alone.
Before I used to get such help & consolation from spiritual direction—from the time the work has started— nothing.
“The work” Teresa mentions in the last quotation refers, of course, to the ministry to which she was called on that providential train trip to Darjeeling. What especially bewildered and saddened her was that the darkness had descended in 1949, right when she believed she was doing precisely the work God had created her to do. Her loss of the presence of God coincided with the granting of the long-sought permission to found the order that became the Missionaries of Charity. Surely the Vatican’s approval was a sign from God that he loved her and wanted her to succeed. But it was just at that point that she felt the door slam shut. God disappeared.
There was to be but one time the door opened in her many years of darkness. Pius XII was the pontiff who gave permission to found her Order. When he died in October 1958, Archbishop Périer celebrated a requiem Mass in the Calcutta cathedral. Teresa attended, and on that same day received a respite from her forlornness. As she wrote Périer, “I prayed to [Pius] for a proof that God is pleased with the Society. There & then disappeared that long darkness, that pain of loss—of loneliness—of that strange suffering of ten years. Today my soul is filled with love.”
But in just a short time, God “thought it better for me to be in the tunnel—so He is gone again.” Teresa would endure the tunnel for the next four decades.
‘Yes to God’
As the years of darkness came and went, Mother Teresa slowly began to see them as something different from the dark night of the soul described by John of the Cross and experienced by Thérèse de Lisieux. It was, she concluded, an essential part of her vocation as a Missionary of Charity.
Even as a teenager back in Skobje, Teresa had longed to serve the poor. When she became a missionary nun, she spent her Sundays roaming the slums around the Loreto compound bringing relief to the poor. When she received the call within a call, she dedicated the rest of her life to giving the poor, the sick, the lonely, and the dying the love that the world had denied them. Moreover, she voluntarily took on their poverty as her own.
Teresa dedicated her life to this work because she believed that Christ demanded it of her. As she so often said, when she succored the poor and the sick, she ministered to Christ in his distressing disguise, the Christ who thirsted. So it was perhaps inevitable, given that she shared in the suffering of the people she served, that Teresa would eventually discern her own inner poverty as a share in the suffering of Christ himself. She remembered the oath she’d made back in 1942 never to deny God anything asked of her, and she realized that loyalty to the oath meant embracing God’s withdrawal.
“We must know exactly when we say yes to God what is in that yes. Yes means ‘I surrender,’ totally, fully, without any counting the cost.” It meant accepting whatever God gave, and giving whatever God chose to take away. And for Teresa, it meant accepting the burden of Christ’s Passion.
When she was allowed that insight into the nature of her darkness, she recognized it as an inevitable aspect of the call within a call, and would go so far as to say that she actually loved the darkness because it was “a part, a very, very small part of Jesus’ darkness & pain on earth.”
Lost and Found
Teresa’s final years were ones in which poor health and physical suffering became her daily burden. Just a few months before her death, suffering from heart failure and pneumonia, she lay in a hospital bed, unable to speak because of the bronchial tube that had been inserted to help her breathe. She tried to communicate with her caretakers by writing on slips of paper, but was too weak to do so. Finally, mustering all her strength, she was able to scrawl, “I want Jesus.” Mass was celebrated in her hospital room and she was able to take a small amount of the consecrated wine.
Those who were with her at the time believed that her request for Jesus meant that she desired the Eucharist, and that’s surely a part of what she meant to communicate. But given her decades of living without a sense of Christ’s presence, it’s not too much to conclude that she also meant she wanted the darkness of God’s withdrawal to end. She’d spent over fifty years reliving Christ’s Passion. If it was God’s will that she suffer, so be it. But she longed for it to end.
In 1962, in the second decade of her sense of abandonment, Teresa wrote something that anticipated her later understanding of her vocation to suffer the Passion of Christ, “If I ever become a saint—I will surely be one of ‘darkness.’ I will continually be absent from heaven—to light the light of those in darkness on earth.”
This is an extraordinary thing to say, because it suggests that Mother Teresa was willing to relinquish the joy of heaven for the sake of those of us who also lie awake in the night wondering where God has gone. No one would deny that the diminutive nun who served Christ in his distressing disguise for over fifty years deserved some rest. But Teresa thought otherwise. Her lifelong dedication to serving God in his people was, so far as she was concerned, only an apprenticeship for her real work after she died.
Originally Posted on LinkedIn on August 17, 2016
I am a patient experience professional and I’m very passionate about sharpening my skills in this people based field. I am relatively new to the field but I can talk patient satisfaction scores with the best of them. I can facilitate a patient experience class in my sleep and I do my best to not only talk the talk but walk the walk. As excited and engaged as I’ve been, the relevance and importance of what I do didn’t resonate with me until I had an aunt who required acute and then eventually (and sadly) hospice care.
This is not to say that I’ve never been in a hospital. I have, however, I can honestly say I have truly been fortunate. My two most recent hospitalizations were to have my two children. I had a great experience for both but having a baby for me was a happy time focusing more on being a good mom, breastfeeding and taking my babies home.
My aunt’s situation was a completely different experience. She unexpectedly became ill on a Thursday afternoon. Prior to this she was a healthy, independent 86 year old woman. This is exactly why she refused a surgery that could leave her bed ridden for the rest of her life. We weighed the pros and the cons in regards to her having the surgery and her declining it. She decided to decline. Then began the countless hours of sitting at her bedside, praying for a miracle and not giving up hope. Unfortunately, a week later she was transferred to hospice and she died the very next day.
Yet, as I reflect on her care I am reminded of the things I teach every day. I tell my colleagues and team members to make eye contact, smile, respect a patient’s privacy, introduce yourself, be responsive, respond to concerns and complaints, apologize and thank. It all came to life in my family’s darkest moments. I remember the Hospitalist team, who very thoughtfully answered all of our questions, even if we asked it the same way several times. The physician who very carefully came down to eye level to explain the risks of my aunt NOT having the surgery. The med student who checked in regularly and said on his way home for the night “your aunt is in my prayers”. The nursing team who worked tirelessly, answered her call bell immediately, smiled and said things like “is there anything else I can do before I leave”. It was everything we needed as we watched a loved one face the final journey of their life.
When you experience patient experience on the other side of the bed you realize how important it is for us to treat others the way we would want to be treated. It’s during that time that it all makes sense. How devastated we would have been as family members if we had encountered the thoughtless and cold provider who cared more about time, volume and reimbursement, than the care of our loved one.
So, if you are a healthcare provider who has been asked or required to attend yet another customer satisfaction, patient experience or even “charm” class, please do not resist. That extra dose of empathy, respect, and compassion provides healing and caring in places medicine can never touch. If you feel as though these things are an innate part of your amazing character already, then you should still go and use the class as an opportunity to share some of your wisdom. Additionally, I don’t think we can ever stop learning about enhancing the patient experience because perceptions and experiences change every moment. While I do not think that I know it all, I didn’t realize the impact a providers tone, compassion and empathy would have on my family and myself at such a crucial time.
Finally, consider this. At some point, no matter who we are, what we do or where we come from, we will all arrive on the other side of the bed. When we do, I am sure we want providers who value the fact that the little things matter and that care and compassion should not be a compliment to medicine but rather how it is delivered every single time.
Thanks for taking the time to read this post and I hope it resonated with you in some way. Please share your thoughts.
Originally Posted http://www.blogAARP.org on 08/22/2016
After Labor Day, when Congress returns from its summer recess, there will only be 33 working days left for the U.S. House of Representatives before the end of the year. That’s not a lot of time to address some of our nation’s biggest challenges. One item awaiting action that should be an immediate priority is the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act. This bipartisan, commonsense step to aid America’s greatest support system — family caregivers — is long overdue.
Passed unanimously by the U.S. Senate, the RAISE Act would develop a national strategy to support family caregivers, bringing together stakeholders from the public and private sectors — including state and local officials, health care and long-term services and support providers, employers, federal agencies, older adults, persons with disabilities and family caregivers themselves — to identify specific actions communities, providers, government, employers and others can take, including with respect to: promoting person- and family-centered care in a range of settings; assessment and service planning involving both care recipients and family caregivers; information, education, referral and care coordination; and respite options so caregivers can reset and recharge.
Today, more than 40 million family caregivers care for veterans, parents, spouses, children and adults with disabilities and other loved ones so they can continue to live at home. The unpaid care family caregivers provide — valued at about $470 billion annually — helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.
I know from firsthand experience that caring for a loved one is a tremendous responsibility. While I have much in common with my fellow caregivers, my experience is unique in many ways. Indeed, each of our caregiving experiences is individual, seen through our own personal family lens. Everyday duties can include bathing and dressing; preparing and feeding meals; transportation; handling financial, health care and legal matters; and often complex medical tasks like wound care. Many family caregivers are working full time and raising families. They are often on call 24/7.
That’s why AARP, together with a number of other organizations and family caregivers themselves, is calling for the U.S. House to pass the RAISE Act now.
One such organization, the Elizabeth Dole Foundation, works with military and veteran caregivers. In a recent radio news story, former senator Dole said:
“Five and a half million military and veteran caregivers are caring for loved ones with devastating wounds, illnesses and disabling injuries — visible and invisible. By passing the RAISE Act, we can create an important path forward so military family caregivers, all family caregivers, get the support they need.”
Another group pressing the U.S. House to pass the RAISE Act is Autism Speaks. Executive Vice President of Programs and Services Lisa Goring says:
“Millions of family members are forced to step in as full-time caregivers to keep their loved ones with autism and other developmental disabilities safe and supported. Now is the time for a national strategy to support all family caregivers to ensure their loved ones a better future.”
For me, it’s the stories and experiences of family caregivers that really underscore why the RAISE Act must pass now. Britnee Fergins cares for her father. She says:
“My 91-year-old father, who’s a World War II veteran, requires a lot of attention. I also have a very energetic 3-year-old son — and work 12-hour shifts as a chemist. It’s a constant juggling act, and some days, I’m afraid I’m going to drop the ball.”
Family caregiving is a unique and deeply personal issue that affects just about all of us, wherever we are on the political and ideological spectrum. We are either family caregivers now, were in the past, will be in the future — or will need care ourselves one day.
The RAISE Act would implement the bipartisan recommendation of the federal Commission on Long-Term Care, requiring the development of a national strategy to support family caregivers, similar in scope to the national strategy developed to address Alzheimer’s disease. The need is urgent and time this year is running out.
AARP urges the U.S. House to pass the RAISE Family Caregivers Act now. And I urge you to contact your representative about the RAISE Act today. Call 844-259-9351 or click here.
The following U.S. representatives are cosponsors of the bipartisan RAISE Act as of Aug. 22:
Reps. Gregg Harper (R-Miss.) and Kathy Castor (D-Fla.)
Rep. Lujan Grisham (D-N.M.)
Rep. Black (R-Tenn.)
Rep. Pascrell (D-N.J.)
Rep. Emmer (R-Minn.)
Rep. Pocan (D-Wis.)
Rep. Deutch (D-Fla.)
Rep. Katko (R-N.Y.)
Rep. Pompeo (R-Kan.)
Rep. O’Rourke (D-Texas)
Rep. Amodei (R-Nev.)
Rep. Duckworth (D-Ill.)
Rep. Chu (D-Calif.)
Rep. Schakowsky (D-Ill.)
Rep. Fortenberry (R-Neb.)
Rep. Gibson (R-N.Y.)
Rep. Pingree (D-Maine)
Rep. Bonamici (D-Ore.)
Rep. Napolitano (D-Calif.)
Rep. Lujan (D-N.M.)
Rep. Hastings (D-Fla.)
Rep. Kirkpatrick (D-Ariz.)
Rep. Kuster (D-N.H.)
Rep. Blumenauer (D-Ore.)
Rep. Lofgren (D-Calif.)
Rep. Freylinghuysen (R-N.J.)
Rep. Murphy (R-Pa.)
Rep. Frankel (D-Fla.)
Rep. Dingell (D-Mich.)
Rep. Lee (D-Calif.)
Rep. Brady (D-Pa.)
Rep. Rice (D-N.Y.)
Rep. DesJarlais (R-Tenn.)
Rep. Beatty (D-Ohio)
Rep. Davis (D-Calif.)
Rep. Beyer (D-Va.)
Rep. Roe (R-Tenn.)
Rep. Stefanik (R-N.Y.)
Rep. Courtney (D-Conn.)
Rep. Langevin (D-R.I.)
Rep. Meehan (R-Pa.)
Rep. Kilmer (D-Wash.)
Rep. Takano (D-Calif.)
Rep. Payne (D-N.J.)
Rep. Allen (R-Ga.)
Rep. Ashford (D-Neb.)
Rep. Peters (D-Calif.)
Rep. Matsui (D-Calif.)
Rep. Larson (D-Conn.)
Rep. Denham (R-Calif.)
Rep. Bishop (R-Mich.)
Rep. Hunter (R-Calif.)
Rep. Smith (D-Wash.)
Rep. Meng (D-N.Y.)
Rep. Cramer (R-N.D.)
Rep. Clark (D-Mass.)
Rep. Boyle (D-Pa.)
Rep. Esty (D-Conn.)
Rep. Dold (R-Ill.)
Rep. Thompson (R-Pa.)
Rep. Lipinski (D-Ill.)
Rep. Messer (R-Ind.)
Rep. Jenkins (R-Kan.)
Rep. Moore (D-Wis.)
Rep. Smith (R-N.J.)
Rep. Clarke (D-N.Y.)
Rep. Watson Coleman (D-N.J.)
Rep. Carolyn Maloney (D-N.Y.)
Rep. MacArthur (R-N.J.)
Rep. Curbelo (R-Fla.)
Rep. Wasserman Schultz (D-Fla.)
Rep. Grayson (D-Fla.)
Rep. Corrine Brown (D-Fla.)
Rep. Takai (D-Hawaii)
Rep. Joe Heck (R-Nev.)
Rep. Cicilline (D-R.I.)
Rep. Joe Wilson (R-S.C.)
Rep. Frederica Wilson (D-Fla.)
Rep. Bennie Thompson (D-Miss.)
Rep. Peter King (R-N.Y.)
Rep. Sessions (R-Texas)
Rep. McKinley (R-W.Va.)
Rep. Slaughter (D-N.Y.)
Rep. Simpson (R-Idaho)
Rep. Kelly (D-Ill.)
Rep. Nolan (D-Minn.)
Rep. Holmes Norton (D-D.C.)
Rep. Capps (D-Calif.)
Rep. Zeldin (R-N.Y.)
Rep. Guinta (R-N.H.)
Rep. Miller (R-Mich.)
Rep. Walberg (R-Mich.)
Rep. LoBiondo (R-N.J.)
Rep. Tonko (D-N.Y.)
Rep. LaHood (R-Ill.)
Rep. Lance (R-N.J.)
Rep. Sean P. Maloney (D-N.Y.)
Nancy LeaMond, chief advocacy and engagement officer and executive vice president of AARP for community, state and national affairs, leads government relations, advocacy and public education for AARP’s social change agenda. LeaMond also has responsibility for AARP’s state operation, which includes offices in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands.
You can follow her on Twitter @NancyLeaMond.