Engage With Grace

I have great respect for what Engage with Grace is working to accomplish with The One Slide Project. The concept is simple. Download this one image, share it whenever possible, and begin a dialogue. Connect with Engage with Grace on the organization's website, on Faceook, and on Twitter.

Caring for Caregivers

Stacy Schaplow was 27 when she got married on Sept. 18, 2010. She was happy and healthy other than a strange soreness in her neck that she wrote off as stress; after all, she was in a dental hygiene program and studying for her state board exams while planning her wedding to financé John. The day of the wedding she took a few ibuprofen for the pain and walked down the aisle in a stunning white dress and carrying a bouquet of white roses and green orchids with eight bridesmaids in funky plum purple dresses and peep toe pumps by her side. The two exchanged vows in an outdoor ceremony, cut their four-tiered cake together, and a few days later left for their honeymoon in Maui. 

It was on the sixth day of the trip while on their way to go wake boarding that Stacy had a stroke. She was rushed to the hospital via ambulance. The doctors told John that Stacy's vertebral artery dissected, causing a blood clot. Stacy was within the three-hour window of time in which doctors could administer Tissue plasminogen activator (t-PA). The drug dissolves clots by thinning the blood, but poses serious bleeding risks. Stacy had become unresponsive in the time it had taken to get to the hospital, so it was left to John—her husband of six days—to decide whether to allow doctors to administer the drug, which could either save Stacy's life or kill her. 

John, for the second time in a week, said I do, consenting for doctors to give Stacy the drug. She lived, but began bleeding in her lungs. She was placed on a ventilator, and John was told that if the bleeding didn't stop, the worst case scenario would mean removing one of Stacy's lungs. It took six days, but the bleeding finally stopped. The question that remained was how much neurological damage Stacy had suffered. "Being on the ventilator and heavily sedated, I couldn't communicate," Stacy writes in her submission to Tiffany Burke Photography's online Love Story Contest for a second honeymoon. "I tried communicating with the nurses and was told that I pointed to my ring finger and they knew then that I wanted my husband. When he got to my room, I squeezed his hand and he knew everything was going to be alright." 

Recovery would be arduous, and Stacy asked her new husband a serious question—whether, given her condition, he still wanted to be married to her. John asked back, "What kind of man would I be if I left you when you needed me most?"

Stacy is among those who found true love and a love who would accept the role of caregiver. To become a caregiver for a loved one is no small task. Relationships are complicated enough without the dynamic of one person depending on another for his or her health and survival. In the most serious of situations, both patient and caregiver are saddled with the loss of independence and ability. What the patient can not do for him or herself the caregiver must do, and the time and effort caring for a patient takes reduces the caregiver's ability to care for him or herself. 

The importance of caring for caregivers can not be minimized. A caregiver is a person who has, by choice or by call of duty, given him or herself to helping another person—but that caregiver is still human. According to a 2009 report by the National Alliance for Caregiving, more than 65 million people provide care for a chronically ill, disabled, or aged family member of friend during any given year. On average, these caregivers spend 20 hours a week caring for their loved ones, while 13 percent of family caregivers spend 40 hours a week or more. Many of these caregivers do not have the luxury of making caregiving their job and so are working to bring in an income in addition to providing care—73 percent of those caring for someone over age 18 in fact. Reports state that the stress of caregiving translates into three-quarters of family caregivers not going to the doctor as often as they should, nearly half of working caregivers reporting that an increase in caregiving expenses has led to using up all to most of their savings, with 40 to 70 precent of family caregivers showing clinically significant symptoms of depression. 

I have not been in the position of being a caregiver; however, I have been—and will continue to be—a caregiving recipient. My experiences have taught me about the humanness of my caregivers. Like Stacy, I had a stroke. Mine was at age 28 after a year and seven months of marriage. One morning I was a reporter on deadline. The next morning I was unable to walk. After a week in the hospital, I had mobility using a walker, but would run into walls. I had double vision with Horner's syndrome on the left side of my face and the loss of pain and temperature on my right side. For several months, the neurological damage was too bad to very actively combat. My husband would get me in front of the TV—which I saw two of due to the double vision—make provision's for snacks and beverages and then have to go to work. Upon his return, he would find me exactly where he left me. He would make dinner, help me bathe, and then set about taking care of the routine responsibilities around the house—doing laundry, cleaning, caring for our pets, etc. 

Fortunately, we did not then (and do not now) have children. I lost my job, which added stress to my husband's already profound sense of duty. Fortunately, my parents are part of my caregiving team, and from time-to-time I would go and stay with them for a few days in order to give my husband a break. He would stay home, watch TV, drink a beer, and enjoy not having me around. There was nothing mean about our arrangement. It was simply honest. Caring for me took a lot of his energy. In addition to always being sure to vocalize my appreciation for all he was doing, what I could do to help him help me was to allow him time to rejuvenate, to give him space and time to be himself, to breathe, to not be so damned responsible. One day I searched online for information about caring for caregivers. A cancer site offered up words like bittersweet chocolates on a silver platter—grief, loss, frustration, anger, resentment. These were the words that my husband and I were choking down without acknowledging their existence—for him. He had not yet grieved the vibrant wife he lost. He was frustrated that he could not fix me. He was angry at the world. And at times, he resented me and all the care I required. Each emotion was at once horrible and a relief to acknowledge. Each emotion was valid and human. We stopped pretending everything was alright, and we cried tears of grief, loss, frustration, anger, and resentment together. 

Three and a half years later things are better. Our lives as individuals and our life together changed with the stroke and continued to change as my health became increasingly complicated. While I recovered most of my function, there are still deficits, and since the stroke, I have lost a kidney, had three of four brain aneurysms repaired, and experienced a gastric rupture. My husband has been my caregiver throughout it all. Like Stacy, I have offered my husband a chance to get out. Like John, my husband has never taken me up on it. 

Remember to vote for Stacy & John's Love Story!

All Things #hcsm

Each Sunday at 9 p.m. EST medical social media Tweeps barrage the Twitter stream with tweets carrying the #hcsm tag. The tag stands for healthcare communications and social media, and those who follow it are involved discussions covering a wide range of topics (T1, T2, etc) from the role of technology in the exam room to patient support groups. The chat, created by Dana Lewis, moves at lightning speed because so many Tweeps are in on it and there's so much to be said in the hour's time. Even if one only "lurks" (reading without tweeting), the chat is educational, inspiring, thought provoking, and a great way to "meet" new people to follow. Throughout the rest of the week, the #hcsm tag pops up from time to time on individual tweets that are related to the overall topic of healthcare and social media, so at any time a search for the tag is sure to turn up something worth reading. In the spirit of the #hcsm chat, today's blog post covers a range of topics that, at least for me, are just as exciting. 

TI - Stanford & Medicine X

It is my great honor to have been selected to serve on Stanford University's Medicine X ePatient Advisory Panel. This panel will be responsible for helping ensure that the patient voice is part of the Medicine X conference that overall will address emerging technologies in healthcare. My fellow panelists are Sean Ahrens, Hugo Campos, Steve Wilkins, and Nick Dawson—each of whom I had the pleasure of meeting at Stanford for the Medicine 2.0 conference in September. To keep up with plans for the conference, a project of Stanford's own Anesthesia Informatics and Media Lab and directed by Dr. Larry Chu, visit medicinex.stanford.edu or follow @StanfordMedX and #medX on Twitter.

T2 - Doctors 2.0 & Paris

Continuing the healthcare and social media conference trend is the upcoming Doctors 2.0 & You conference to be held in Paris in May. The conference is a true international affair and an incredible opportunity to look beyond the American healthcare system for ideas. Previous speakers whose names ring (or should ring) a bell with those on this side of the sea include Brian Vartabedian of Texas Children's Hospital/Baylor College of Medicine and author of 33charts.com, Victor Montori, who has worked with the Mayo Clinic's Social Media Center, and Gilles Frydman, co-founder of the Society for Participatory Medicine. Denise Silber, conference organizer and president of Basil Strategies, has said that she'd love to have me there. Registration fees may be waived for international patients; however, travel to Paris is not covered. Like most patients, I am unable to afford a trip to Paris, regardless of purpose, and so am putting out the call for sponsorship—for myself and for fellow patients who hope to attend the conference. For now, Silber is the contact for patient travel sponsorship. Thanks to the suggestion of the ever creative ePatientDave, I am hoping to set up a Kickstarter.com page to help bring in donations, and if it is approved and goes live, I will be sure to let you know. My estimate is that the trip will cost approximately $2,500 for airfare and hotel. As an alternative, I also have set up a PayPal donations account. My involvement in healthcare, social media, disease awareness, and patient advocacy is all building up to a book, which I will begin writing in 2012. Should I exceed my sponsorship goal (a girl can dream!), then funds will be used for a planned writer's residency at Wellspring House and actually bringing the book from concept to fruition.

T3 - FMD Chat

Shortly after my diagnosis with intimal fibromuscular dysplasia, Kari and I stumbled across one another on a Mayo Clinic discussion board when we both responded to another patient's posting about having high blood pressure and gastrointestinal issues but having passed all GI screenings with flying colors. Kari had responded that the young female patient should consider having a vascular work up. I agreed with Kari 100 percent—the patient's symptoms and history so closely mirrored my own—and responded to the patient saying as much. Kari and I alerted on one another like two hound dogs on the trail of the hunt, which is to say we recognized ourselves in one another. Sure enough, we shared the FMD diagnosis. I can not impress what a life-altering moment it was to have not only unexpectedly stumbled across another FMD patient but my first fellow FMD patient. Kari and I instantly clicked and became fast friends. Every time I hear her Minnesota accent, I think of Frances McDormand, William H. Macy, and Steve Buscemi. She's a firecracker who, after already having a successful career as an RN, has made it her life's work to be a patient advocate for those with FMD,  is the vice-president of the Joe Neikro Foundation, which is dedicated to raising awareness of and researching aneurysms, and founded the Midwest Women's Vascular Advocates group. One night Kari and I had a conversation about how, as a patient, I had never had the experience of any kind of support group—for my bypass, for my stroke, for my aneurysms, for FMD. The next morning FMD Chat was born. The group's goal is to offer non-medical, peer-to-peer support to FMD patients around the world, and it is based on Facebook specifically so that it is open, accessible, and free. Since it's creation, FMD Chat has blown me away. There have been other online groups, but the pervasiveness of Facebook has allowed for more connection between patients than I had previously thought possible. There are so many patients who are frustrated and scared and who simply want to talk to another patient with their same disease so that they don't feel like such a freak. My fellow FMD patients move me with their stories and their compassion. I am so glad to be a co-founder with Kari because I know she is someone whose heart is in the right place and will always put patients first. 

T4 - Upcoming Gigs

I will be writing a guest blog post addressing talking about dying and advance directives for the Death with Dignity National Center this month. Learn more about end-of-life issues by participating in the weekly TweetChat on Wednesdays at 10 p.m. EST. Follow #EOLChat. On Jan. 11, 2012, I will be moderating the hospice and palliative medicine TweetChat, which is held each Wednesday at 9 p.m. EST. Follow #hpm. The absolutely fabulous Renee Berry and Christian Sinclair organize the chat. 

To Flow As Water Does

We are all going to die. Let me repeat that. We are all going to die. So get over it. Or at least do the best you can to get over it because you can't stop it from happening.

The problem is that as a culture we have grown to associate death with an end, with a loss, with grief, with pain. How would our relationship with death change if we could realign our perspective so that death is viewed simply a transition? Death is what is supposed to happen. It is natural. It is—depending on one's spiritual views—just another life event. If we talked about death more, would we be so scared of it?

There is a practice in psychology that involves addressing trauma by talking about it and by allowing the very feelings that one tries so hard to block out to be fully experienced. At first, the very idea of undergoing this process is terrifying and causes anxiety in a patient. A patient typically has spent great amounts of effort avoiding everything related to the trauma—sights, smells, sounds, textures, etc—that he or she has gone tremendously out of his or her way not to come into contact with the feelings originating from the trauma. I equate it to walking around the other side of a building that takes up a full city block in order to avoid a puddle. Patients most likely will not be successful in dealing with their trauma and its lingering emotions if they attempt to change their perspective by running headlong into the puddle. Rather it is a process. First, one must think about not walking around the other side of the building. That in an of itself is a challenge. Then one might decide to examine the puddle from afar. Next the puddle may be approached. Perhaps the patient throws a stone in the puddle. The patient might then sit next to the puddle. Each phase of the process is slow and dutiful, and at any time there may be regression so that the patient again must walk around the other side of the building in order to experience a bit of relief from the intense feelings that arise from dealing with one's puddle. 

This exercise allows the patient to address their fears and emotions with a certain degree of control. Control is the very thing that many trauma victims lost and what they try so vigilantly to maintain post-trauma as a method of coping. But trying to control everything that goes on around us is exhausting. Patients may seem stressed, hyper-critical, and unreasonable, but all they are really trying to do is protect themselves from being hurt again. Fear is the motivation. Fear is what must be quieted. 

Like trauma victims fear losing control and being subjected to reminders of their trauma or a subsequent trauma, we fear death because we can not control it. We try to. We hang on so tightly that we strangle our own lives, and when the time comes, deathbed wishes tend not to be that we were more punctual, or had the oil changed more often, or cleaned the bathroom tile grout more throughly. The regrets are that we did not live more, love more, laugh more. 

And so we must learn to let go. We must learn to control only that which we can control and which is worth controlling, and let the rest be as it will. We must relax, accept, and move with the fluidity of life like a leaf floating on the surface of a rushing stream. We will be swept along, we will reach eddies and be trapped by twigs, we will sink, and we will rise, yet we will still be a leaf. And when our leaf finally settles in its resting place, it's return to the earth will nourish new life, and so the cycle continues. 

As we accept our condition of impermanence and allow ourselves to move with the flow, we may still exercise good judgment to make preparations that will ease the lives of those around us at the time of our passing. Such is the role of advanced directives, which spell out an individual's wishes for end of life care in the event that the individual can not speak for him or herself. Rather than leave family members, friends, and caregivers wondering what one's wishes might be, one can have a say and help alleviate some of the doubt and stress of decision making. To issue an advance directive is to give the gift of peace of mind. For those who struggle with a desire to control life and death, writing advanced directives is the closest that one can come. Directives are not simply wills that divide personal belongings. Advance directives relate to all documents regarding the end of life. Directives allow one to say whether he or she desires life prolonging measures, whether measures should be taken for two weeks or two years, whether one wishes to donate organs, how one wishes to have his or her body put to rest, as well as how one wishes financial and property issues be handled. 

Those whose end of life wishes may be considered unique or those who already know that their wishes are not in line with their family's wishes are particularly encouraged to pursue advance directives. For example, I have determined that I want a green burial—one without embalming fluids that will allow me to decompose naturally in a green cemetery where coffins are made of natural materials or bodies are buried only in a shroud. My advance directive outlines this wish, as well as notes my desired cemetery, my casket of choice should one be required, my pall bearers, and my wishes for visitation and burial ceremonies—there will be punch and pie and pierogi. I update the document, which is a simple form that I keep on my computer, every year or so and have shared it with my husband and parents. My directive documents are not legal documents because I have discussed my desires with my family. My family is supportive of my decisions. Those who may not have this kind of support will want to ensure their documents are legally binding—not to sue from the grave, but for peace of mind. 

Evaluating one's own final wishes can be an extremely uncomfortable task. Consequently, my recommendation is to think about final wishes before one needs to think about final wishes. Although the questions often are deep and emotional ones, one is essentially writing an agreement—though is it easier for one to change his or her mind about whether to play Eric Clapton or B.B. King at the service than it is to get out of a cell phone contract. Families may wish to make writing advance directives a group effort to be approached with love and light and laughter. The fact of the matter is that the majority of people are afraid of the same things, which means that no one is actually alone in their fears. Like the trauma victim working through the therapeutic process, talking about fears takes away some of their power. 

Caring Connections, a program of the National Hospice and Palliative Care Engagement Organization, provides a wonderful set of resources for creating advance directives including state specific directives and information about starting a discussion with loved ones about advance directives and end of life issues. (To access these resources, visit this link.) Before beginning such a conversation, one should read Dr. Ann Becker Shutte's "Five Steps for More Compassionate Listening" to help facilitate a productive and caring dialogue. Shutte is a licensed counseling psychologist who also leads a weekly Twitter chat about end of life issues at 10 p.m. EST on Wednesdays. To participate, follow the #EOLchat tag. Make it a goal to have discussed matters with your loved ones—or better yet have written your own advance directives—by April 16, 2012, which is National Healthcare Decisions Day and allow yourself to spend your energy living instead of trying worrying about dying.