Healthcare personnel in the ambulatory care setting should be educated about how to best prevent the transmission of infectious agents, and infection prevention and control policies should be updated every 2 years, according to the American Academy of Pediatrics.
Writing in Pediatrics, an updated policy statement emphasized the importance of hand hygiene, as well as implementing specific isolation precautions when dealing with patients with specific highly infectious illnesses. The authors said that respiratory hygiene and cough etiquette strategies are necessary when handling patients with respiratory tract infections, such as cystic fibrosis. They further discussed the necessity of separating infected children from uninfected children, as well as proper disposal of all needles and medical devices and the appropriate use of personal protective equipment.
Finally, the authors addressed public health interventions, including that both patients and healthcare personnel should be up to date with their immunizations.
This story was originally published by MedPage Today, a trusted and reliable source for clinical and policy coverage that directly affects the lives and practices of health care professionals and provider of free CME.
It’s that time of year: almost everyone is being discharged from hospital visits with an antibiotic. From pneumonia to skin infections to strep throat, there are a myriad of reasons your patients may leave with an antibiotic prescription. With microbial resistance on the rise, and because of the many complications of antibiotic use (C. Diff comes to mind), nurses play a crucial role in ensuring medication compliance and proper home use. Below are some tips for making sure you are teaching your patients correctly about their medications—from penicillin to Cipro and beyond.
1. Make sure your patients know to take their antibiotics with food, preferably at mealtimes.
Many antibiotics can upset the stomach or cause gastritis, so avoid taking them on an empty stomach. (The only antibiotics that should be taken on an empty stomach are ampicillin, dicloxacillin, rifabutin, and rifampin.) A heavy meal is not necessary, but a small snack can prevent indigestion.
2. It is imperative that the patient take the full bottle or dispensed amount, even if they start feeling better before completion.
In fact, it is very likely that the patient will feel better before the prescribed amount is finished. Even so, feeling better is not an indication that the bacteria are all gone. Patients who do not complete their entire prescription help promote antibiotic resistance, because any bacteria not killed yet can go on to reproduce with genes that allow them to avoid destruction by common antibiotics. Sometimes, emphasizing to patients that future antibiotics may not work for them can be an effective way to ensure compliance.
3. If the patient has a reaction to an antibiotic he or she needs to call their doctor immediately.
Several antibiotics can cause rashes or hives, or more seriously, an anaphylactic response. It is important to teach your patients to be on alert if it is a medication they’ve never taken before or if they have had reactions in the past.
For some specific classes of antibiotics, some additional teaching is required.
Fluoroquinolones, such as ciprofloxacin, levofloxacin, or moxifloxacin, can cause tendon injuries. Specifically, patients may experience peripheral neuropathy that can have permanent effects. Caution patients to immediately report any symptoms of pain, burning, pins and needles, or tingling or numbness. Rupture of the Achilles tendon is possible even with short-term use of these drugs.
Antibiotic–associated diarrhea is an overgrowth of usually harmless bacteria that live in the GI tract, most usually Clostridium difficile. In severe cases, C. diff can be life-threatening. The antibiotics most likely to cause a C. diff infection are fluoroquinolones and clindamycin, but diarrhea remains a risk when taking any antibiotic. To help prevent cases of C. diff, patients can take an over-the-counter probiotic or eat yogurt with live and active cultures (but yogurt must be ingested three times a day to be effective).
Certain antibiotics, such as tetracyclines (doxycycline) and fluoroquinolones, need to be separated from divalent cations—found in dairy products, antacids, and vitamins—by at least two hours. These antibiotics can also cause gastritis, so it is important to still eat them with a small meal to decrease this effect.
It’s no wonder our patients can be overwhelmed when taking antibiotics—there is a lot of information to remember! But proper patient education can help nurses play a role in preventing microbial resistance and ensuring safe medication compliance.
Perhaps all professions have stereotypes. For instance, the Italian chef, the cocky policeman, or the disgruntled cashier are all possible types in these professions—and they do nothing for the people who actually work in those professions. Unfortunately, nursing is the same way, having a bevy full of stereotypes that describe different types of nurses. However, with nursing, the stereotypes are something different. They are skewed, insidious, and dangerous.
On the website, TruthAboutNursing.Org, Sandy Summers, RN, MSN, MPH, and her group help to dispel some of the myths surrounding the stereotypes that nurses must endure. The nurses that these stereotypes are supposed to represent are completely at odds with what nurses actually do. They are introduced and perpetuated by the media so that the general public thinks this is what nurses are. For nurses to be respected, though, we must overcome these stereotypes and show what nursing really is. Not only does our profession depend on it, but the lives of our patients may depend on it, as well.
All nurses are angels. We are sent from above to provide other worldly care and make our patients feel like they are in heaven. The angel is unassuming, flinches at the sight of blood, and usually needs help finding their way out of a paper bag. Not only is this a sexist idealization of nursing, it is completely misguided. Yes, nurses save lives, and yes, nurses are often called angels by their patients. However, nurses are professionals.
We are not ones to shrink from a situation, and we certainly don’t need to turn to anyone other than our fellow nurses when there is a problem with a patient. The angel stereotype assumes that the nurse is a shrinking violet, most likely a female, who fluffs pillows and hands out orange juice. This is not nursing. Nursing can be surprisingly violent and dirty. It isn’t angelic to clean a trach or to perform post-mortem care. However, performing these duties are part of the sacred trust of the nursing profession, they don’t fit the stereotype of the sweet, clean, perfect, and unsullied angel that the media would have you believe that nurses are.
The battle-axe is the nurse intimidator, so aptly portrayed by Nurse Ratched in One Flew over the Cuckoo’s Nest. Surprisingly, this stereotype is seen in many different media outlets, and patients tend to believe that there are these super angry, sadistic nurses that are just waiting to pounce on them. Of course, the battle-axe runs in direct conflict with the angel. While one is sweet and kind, the other is the bitch. It should be noted that all of these stereotypes are distinctly female, keeping men from even considering nursing as a viable profession.
Nurses are not battle-axes any more than they are angels. Again, we are professionals, just trying to do a job. There are no angry, sadistic nurses who would treat patients poorly simply because they are having a bad day or because they’ve “been around the block.” The battle-axe stereotype is probably the most inexplicable. Who came up with this idea that nurses could be mean-spirited bitches? Nursing is hard work, and many of us are frustrated with the profession. However, that would never translate over into patient care. If it did, we shouldn’t be nurses.
3. Naughty nurse
Perhaps the most derogatory stereotype is the naughty nurse one. If you go into any Halloween store, you will find the costumes with the tight white dresses and the short white skirts. It is embarrassing to nurses and completely degrades the profession. The naughty nurse image turns nurses into a sexualized stereotype that is completely at odds with what nurses actually do in their job. Furthermore, it projects the image that female nurses are sex objects and can be treated as such by patients in the hospital setting.
Another byproduct of this issue is that men may not want to enter the profession because they don’t want to be a naughty nurse. They don’t want their own sexuality questioned because the general consensus is that a nurse is primarily a female sex object. This means that a great deal of male candidates would rule out nursing as a profession, and that can weaken nursing as a whole. You don’t need to be a feminist to see that the naughty nurse stereotype is dangerous. It is not just good clean fun. Nurses are put down by this view of them, but they can also be put in danger by men who think they are nothing more than sexualized, bed bath giving creatures of pleasure – not the medical professionals that they are.
A handmaiden is someone who is at the beck and call of someone else—in this case, the doctor. Nurses are sometimes seen as the ones who are commanded to do what the doctor says and run to fetch. The problem with this stereotype, besides being wrong, is that is sets up a situation in which nurses are seen as only doing work that is manual in nature. For instance, a nurse can give a bed bath, but not make a decision on holding a benzodiazepine on a confused patient. A handmaiden can fill water pitchers, but not listen for lung sounds and determine the difference between rales and rhonchi. Handmaidens do physical work, not mental.
The public doesn’t understand what nurses do when it comes to the real intellectual work of the profession. Nurses use critical thinking as much as doctors. They often have to make decisions on the spot. They have to determine when to involve the doctors, and then they have to decide what the salient points are to relate to the doctor. Nurses are far more than handmaidens because they are far more than people who do physical work. While the physical work will always be a part of nursing, it is only a small part in this changing profession. In the past, it had a far more prevalent role, but the media has not caught up to how nursing has changed. The public just doesn’t really know what it takes to be a nurse in today’s health care world.
Finally, the stereotype that ties all of them together is that nurses are generally unskilled. Everyone knows that doctors go through an intense amount of training and that they give orders. Everyone has this sense that there is a hierarchy in the medical system and that doctors head it. As a consequence, the public thinks that nurses are at the bottom, and they are therefore unskilled. As with any unskilled laborer, they would deserve less respect and would be replaceable. Of course, none of this is true because there is a marked difference in the skill set of a doctor and a nurse. It takes particular types of skills to work as a nurse, and saying a nurse is unskilled shows complete ignorance of what a nurse actually does.
Nurses assess, meaning that they look at a patient and determine health or disease. Nurses make independent diagnoses of their own and act on them, measuring the outcome of their actions. For instance, if a patient is suffering from chest congestion, in conjunction with the other health care professionals, nurses can implement treatments such as incentive spirometry and ambulation as allowable. They can also suggest to the health care team the possibility of starting albuterol treatments if they are not contraindicated. These are not the actions of an unskilled laborer. It takes a great deal of thought and skill to assess, diagnose, and treat these conditions, and this is only one example. Nurses are skilled in helping patients holistically, and this makes them vital cogs in the great machinery of health care.
In conclusion, nurse stereotypes are dangerous to nurses and the public alike. They are dangerous to nurses because they take away from the profession. People who may want to become nurses may not because they feel that nurses actually are this way. The media does nothing to change how nurses are portrayed and actually perpetuates these stereotypes. They do nothing to find out the truth. It is harmful to the public because nurses don’t get the funding, respect, or help they need to protect their profession. When nurses are degraded, patients suffer. Management sees nurses as expendable, and this means patients don’t get the best nurses or even enough nurses. In the end, stereotypes hurt patients, and it is time for the media to get it right. The health of millions literally hangs in the balance when nurses are disrespected.
I was recently asked by a colleague who was preparing a presentation about ethical issues in pediatrics to share with him my thoughts about this topic, in light of my experience as a pediatric nurse. My recounting grew into an essay about the joys and challenges of caring for children and their families at some of the most vulnerable moments of their lives.
Easy to Forget
There’s something I said regularly during my years at the bedside. I remember saying it one night when a neurosurgeon and I were using a syringe and scalp vein needle to draw 30 milliliters of crankcase oil-colored spinal fluid from the brain of a tiny baby. I said, “You know, it’s easy to forget that not everybody’s job involves doing stuff like this.” I heard that sentiment many times from the other side as well: I worked in a NICU at a regional referral hospital, and grandparents would come from outstate to visit their newly born, seriously fragile grandchildren. They would say, “We never knew there was a place like this. And we wish we didn’t know.”
In order to continue to function in the profession we have chosen, we have to become accustomed, inured, some might say desensitized, to regularly doing extreme things, including things that cause pain to the people we are trying to help. There’s a subset of caregivers, especially if they don’t have other, unrelated but strong, influences and activities in their lives outside of work, who lose track of this discrepancy, to the point where they aren’t able to articulate the extremity of what we do – it’s like asking a fish about water. But in the NICU where I worked for 25 years, one of the reasons why we survived and why I loved so many of my coworkers is because they had lives outside of work – families (we helped each other raise our children), crafts (many knitters, scrapbookers, quilters, all giving each other ideas), culture (many musicians, theatergoers, movie fans), and literature (we had a lending library and an informal book club during breaks). They were whole, broad people, with a particular skill that society finds useful but takes a great personal toll.
A Family Affair
Since pediatric patients (except for some older teenagers) can’t act independently, pediatric health care is by necessity a family affair. So another aspect of peds is that the emphasis on the family often gets extended to staffs and caregivers as well. Staffs on pediatric units and in clinics are more likely than on adult units to be seen through the metaphor of a family (sometimes overtly in the cultural language of the unit, sometimes covertly by leaders who try to re-create the nuclear family among their staff). This can lead to all kinds of problems with boundary issues, stress for staff members for whom family is a negative or even traumatic construct, and extra mental work for people who are just trying to manage their intra- and interdisciplinary roles, let alone sibling rivalry and funny uncles.
When Errors Happen in Pediatrics (or, When Bad Things Happen to Helpless People)
Errors, especially those that reach the patient, and most especially those that cause demonstrable harm, are traumatic for everyone whenever they occur. But in pediatrics, errors are especially devastating because most pediatric patients can’t speak for themselves, and their families are left with the added burden of feeling that they failed in their duty to protect their children from harm.
The “brand” of pediatric health care is full of very visual stories about miracles – tiny premature babies with tubes and wires all over their bodies who survive against all odds; bald kids with cancer who grow up to be physics majors; toddlers missing a limb who are learning to walk with prosthetic legs. The reality is that errors of commission and omission occur in pediatric health care, but the backdrop of the narrative of miracles makes the errors that do happen more salient and less understandable and forgivable – it’s regarded by some as if the person who made the error is ignoring God’s will, or even working against God’s will.
Pediatric Weight Differentials – Source of Error
In adult medicine it’s possible for one patient to weigh twice as much as another. But in a pediatric unit, it’s not unlikely for a nurse to have two patients assigned to her or him, one weighing 4 pounds (e.g., a post-op premie or a newborn with failure to thrive) and one weighing 400 pounds (e.g., a morbidly obese teenager with asthma). When you have weight differentials this wide, the potential for overdosing, underdosing, and errors in prescribing, dispensing, and administering medications is huge. Computerized medication management systems help minimize the chance of error, but the overarching issue remains.
There’s a useful teaching question for health care professions students: What is the correct dose of most medications? The answer is: one. One tablet, one capsule, one teaspoon, one milliliter, one suppository, one spray. Drug companies create their products this way, for ease of use and for safety, and for full-size human beings, it works quite well. However, in pediatrics, all bets are off.
Patient-Controlled Analgesia in Pediatrics
This topic is symbolic of the unique world of peds. When hospitalized grownups have pain, they may be provided with IV pumps that let them, within pre-programmed safe parameters, give themselves bumps of pain medication. Pediatric patients younger than about 15 can’t reliably manage this process themselves. But since the pre-programmed pumps are a safer, easier, and more sterile way to manage pain using IV meds, many pediatric patients, including infants in NICUs, now have the pumps, with the boluses of medications given by nurses, often as an adjunct to continuous infusions of those same medications. There are errors associated with these pumps, so that they may be seen as less safe than the former, intermittent, one-shot-at-a-time process, but actually the errors are fewer now, and overmedication is no more frequent. This pump technology is still resisted by some pediatric health care professionals.
Just Say No: Preventing Narcotic Addiction in Small Children
When I started my career in pediatrics in 1967, the received wisdom was that the few premature babies that survived did not experience pain. It wasn’t unusual for a baby to have major thoracic or abdominal surgery and receive no post-op pain medication at all. We thought we were saving lives, because pain medications cause hypotension. In the rest of pediatrics, the word was that, since toddlers and young children snapped back from surgeries and fractures more quickly than grownups (which was observably true), they didn’t need pain medication for such a brief span of time. For teenagers, our goal was to keep these kids from learning that taking drugs can feel good. The overarching goal was to prevent drug addiction, and if the patients had uncontrolled pain, the trade-off was worth it.
We have come a long way since then, but those attitudes and values remain, especially in some health care professionals of my generation.
Reluctance to Refer to Pain Management and Palliative Care Services
In many in-patient settings, including pediatrics, the people (especially the physicians) who are the experts in pain management are the same people who are experts in hospice and palliative care. They also tend to be people who are open to Complementary and Alternative therapies. They may dress differently than mainstream physicians and their body language and proxemics are often different than mainstream physicians. Their offices may be in the basement of the hospital or even off-site. They may well be the only physicians who attend presentations about caregiver self-care, even though they are the ones who may need it the least. And physicians who are allergic to hospice and palliative care for children, seeing it as admitting failure, may view a referral to the Pain and Palliative Care Service as a referral to a service that is a cultural outlier: not scientific, not medical, not one of us. The patients and their families, as well as the nurses who are caring for these children with poorly controlled pain, all suffer from this reluctance to refer.
End-of-Life Care for Pediatric Patients
Decisions about withholding or withdrawing treatment are very different for a premature baby, a toddler with end-stage cancer, or an adolescent who is in a vegetative state after a brain injury, than they are for a 90-year-old person, especially a 90-year-old person with an advance health care directive. But futile treatment is a reality in pediatrics, too. A frequent scenario involves a group of providers who have done everything they are trained to do and that their oath directs them to do, to save the life of a child. When the life is not saved, a pediatric death with dignity is not in their mental repertoire, but neither is a referral to experts in pediatric death with dignity. The ethical principles of beneficence, non-maleficence, efficacy, and justice, when applied to pediatrics, assume that the child’s parents are the ones best able to decide for and advocate for the child. But many times when treatment has become futile, the parents have no experience in these kinds of decisions and take their cues from the providers. The nurses are caught in the middle, continuing to perform painful, time-consuming, possibly expensive, clearly futile treatments. The term Moral Distress resonates with every nurse who has walked this path. And, going back to my initial comments about easy to forget, our families, friends, acquaintances, and the strangers we encounter in our daily lives, usually have absolutely no clue about this path we are walking.
If you’re taking care of an aging parent, you will likely face days when the tasks seem overwhelming. By acting strategically, however, you can ease the burden. In honor of National Family Caregivers Month, here are a few pointers to make your life easier.
Tap Community Resources
Your support system may center on family and friends, but it’s also critical, say experts, to tap every possible resource. Fortunately, most communities have offices dedicated to supporting older adults and their families with referral, informational, and other help. Since the Older Americans Act debuted in 1965, Congress has funneled trillions of federal dollars into state and area agencies on aging to provide an array of community and individual programs. Often in combination with other state and local funds, the money facilitates partnerships with area service providers to help seniors and their caregivers cope with all manner of aging issues. By checking with your local office on aging, chances are very good that you’ll be able to connect directly with the resources you need or at least with other groups that offer them. “Seeking out your county office is a great starting point for navigating local resources that are available,” says Meg Stoltzfus, a lifespan service manager in the Office of Work, Life, and Engagement at Johns Hopkins University in Baltimore, Maryland.
Strut the Small Stuff
There are many aspects to staying organized, but taking a few small steps can keep things under control. Although you likely can craft a list of your own, Amy Goyer, a family and caregiving expert for AARP, suggests a few starters: Focus on one task at a time to avoid procrastination. Use paperless statements and online billing to eliminate paperwork. Embrace technology of all sorts since it can streamline your world. If you’re smart phone savvy, for instance, take advantage of user-friendly apps to help track records, share schedules, and keep your caregiving circle informed and engaged. Even though you have options, Goyer recommends three: CareZone, CaringBridge, and Lotsa Helping Hands.
Locate via a Locator
Although identifying area resources is a logical first step, don’t be shy about going national. Stoltzfus, for instance, routinely recommends Aging Life Care Association, a nationwide association of nurses, social workers, and other practitioners dedicated to the delivery of high-quality health care for elderly and disabled adults. With expertise in a variety of areas key to aging well, these geriatric care managers serve as both guides and advocates for families with various resource needs. To find an appropriate professional in your community, visit www.aginglifecare.org. “This is a fantastic resource, particularly when you’re providing care long distance,” Stoltzfus says. “It’s a way to find an extra set of hands, get resource ideas, or just provide care coordination that’s difficult long distance.”
Hire a Personal Assistant
Celebrities aren’t the only people who can benefit from a Gal Friday. Hiring a personal assistant by the hour to run errands in a pinch can free you up to concentrate elsewhere. Goyer, for instance, employs a concierge to assist her with tasks not directly related to her 93-year-old father’s Alzheimer’s care, but critical to her schedule nonetheless. Whether that involves taking her to the airport, sorting her stacks of mail, or doing whatever needs to be done at the moment, her assistant takes over the minutia so she can focus on the bigger picture. “I can hire Debbie for two hours,” says Goyer, “and she gets more done than I would get done in a week.”
Chart Your Requests
You may be missing willing volunteers because they just don’t know what needs to be done. Carol Abaya, MA, a nationally recognized expert on aging and elder/parent care issues, suggests creating a simple chart by dividing a piece of paper in three parts vertically to sort out your options. In the first column, list all the things your elder charge can do. In the middle column, add those things that require some help. Fill the third column with those tasks that he or she can’t do at all. On a second paper, note your resources, whether that includes individual siblings, agencies, or others from the community. Once you’ve identified the possibilities, match your needs with volunteers and let them know. “Many times a family member will say, ‘What can I do?’ and the primary caregiver really doesn’t know,” she says. “This is one way of dividing the chores.”
Get Legal Control
Being authorized to pay the bills and handle other business transactions are critical in ensuring someone’s safety and security. If you anticipate that your elderly parent won’t be able to care for his or her own financial or legal affairs, you need to act as quickly as possible to ensure that you can do so. Obviously, there has to be trust between the two of you, but you want the proper documentation to write checks, manage assets, and make other decisions in your family member’s best interests. That likely will involve signing a power-of-attorney. “People are often afraid that if they give a child a power-of-attorney, they’re going to lose the power to take care of themselves,” says Abaya. “But it only comes into play when they can’t handle those chores.”
After discovering that funds had been embezzled from her father, Polly Shoemaker, RN, BSN, MBA, the director of clinical systems at St. John’s Hospital in Tulsa, Oklahoma, was more than willing to get the ball rolling when he asked, “Polly, how can you protect me?” The two of them not only drew up a power-of-attorney, but also put her name on a new checking account, updated his will, and made sure that correct beneficiaries were listed on his portfolio assets. Even though being her dad’s eyes and ears on such matters was draining, Shoemaker wanted to ensure that he had signed everything pertinent so she had license and direction. “When he said to me, ‘Polly, I just want to do what’s best for you,’” says Shoemaker, “I told him, ‘Dad, it’s not about me. If you tell me what you want done, I need it in writing because we can’t go on word of mouth.’”
Practice a Little Jujitsu
Achieving progress acceptable to you and the person who needs you may require changing your approach. For starters, experts suggest making sure you make decisions with an elder, rather than just for him or her. Obviously, the dynamic will change depending on the mental and physical capabilities of the elder in your charge. Yet you need to honor this person’s opinions at the same time you pace the conversation to reflect where he or she is at that moment.
For instance, when Abaya was taking care of her own ailing mother’s real estate business, she quickly learned to limit her inquiries to one or three questions per hospital visit, just enough for the woman to process. She also made it a practice to never hire anyone without letting both parents vet the individual first. “Too often sandwich generation caregivers make decisions for an elder that are not in tune with that person’s likes and dislikes,” she says. “But we have to consider their preferences and values.”
When Polly Shoemaker, RN, BSN, MBA, looks back on early 2016, she doesn’t know how she juggled everything. As director of clinical systems at Tulsa, OK-based St. John’s Hospital, Shoemaker already had a challenging job. But when her father’s esophageal cancer took a southward turn, she not only had to carry the logistical load of his care, but also keep up with work and family. “I don’t know how I did it, but I needed to and wanted to, so I did,” she says of her struggles as a sandwich generation caregiver.
Perhaps that’s you. Like Shoemaker, you’re feeling the squeeze of being a sandwich generation caregiver. You’re in the middle, raising sons and/or daughters while caring for an elderly parent (or other aged person). Even if you don’t have children, you may still find yourself pirouetting between the need to be at work and the need not to be there because someone else relies on you.
As Amy Goyer, a family and caregiving expert for AARP and author of Juggling Life, Work and Caregiving, notes: “When you look at the demands of your time and you’re juggling all of these things with just 24 hours in the day, it’s really difficult to prioritize and get it all done.”
Admittedly, there’s no one-size-fits all strategy for handling all the facets of your life. Yet, by being organized and engaging others, you can take care of everyone—including yourself.
Be Organized (But Go with the Flow)
Getting and staying organized are the most important survival skills for managing caregiving, says Goyer. In streamlining your schedule, you not only need to prioritize structure and routine, but also implement small steps to ease your daily duties. Phone apps, for instance, can keep you on course by organizing schedules and people.
Also, keep a contingency plan in your back pocket. Whether that means changing your goals, adjusting your schedule, tapping your backup team, or even modifying your definition of success, you want a strategy for when events don’t unfold as you envisioned. “Sometimes, we sacrifice the very good because we want the perfect,” says Goyer. “But we have to make compromises and not be resentful about them.”
Shoemaker agrees, noting that in getting her father to supplement the morning and evening tube feedings that she and her husband performed faithfully, she made sure that he had his favorite brands of nutritional drink brands so he’d drink during the day. And even when it became easier for her to write his checks, she still let him sign and even deliver them so he felt included in the process. “I finally learned that something was better than nothing,” she says. “I had to bend on some things.”
Don’t Be Afraid to Seek Help
You may think you’re the best person to handle caregiving. After all, you know the human body, understand the aging process, and are savvy about procedures and potential outcomes. Who better than you to be in charge? But truth is, you can’t do everything. Asking others to step up to the plate can diffuse the physical and emotional stress of people being dependent on you—along with the guilt when things don’t get done right. As Carol Abaya, MA, a nationally recognized expert on the sandwich generation, notes: “One of the big fallacies is that because it’s your parents or family members, only you can do everything for them. You can’t, and you shouldn’t.”
Admittedly, calling on brothers and sisters when you need all hands on deck can be challenging. A family health crisis can bring up a host of issues, not to mention uncover genuine differences of opinion. And sometimes it’s just easier to give siblings a pass because they live a distance or are grappling with their own issues.
But you do yourself no favors by discounting the very relatives who also may have a stake in this person’s health. Bringing them on board can be very helpful, even if you have to brush up on your negotiation skills. If you’re rusty in approaching your siblings, making demands, or setting boundaries, you may want to join a support group to learn from others how to assign tasks and say “no.” “Even if a sibling lives far away,” says Abaya, “you have to be able to say, ‘I need you to come and take care of mom or dad for a long weekend so that I can get away.’”
As the on-call patient care coordinator for Hospice of Central Pennsylvania, Nicole Planken, RN, knows the value of having others available when you’re caring for ill patients. She’s not only seen it in her professional life, but also as the primary caregiver for her mother, who’s partially paralyzed from a stroke post-brain aneurysm, and her mother-in-law, who suffers from stage IV lung cancer.
Planken is fortunate in that her sister and aunt are both closely involved with her mom. Moreover, she credits a caring husband who has the flexibility of being self-employed to pinch-hit with their son, her mother, and her mother-in-law. What does it take to cover everything? Although Planken credits her night shift schedule for making things work, she has a few other things in her quiver: a strong faith to keep her centered, written notes to track the minutia, and naps to stay refreshed. “I never feel like it’s an inconvenience or a burden to drop everything and do what they need me to do,” she says. “The only problem is that my life consists of many two-hour naps. I need rest in between everything. It’s my biggest challenge.”
Engage Your Employer
If you’re like other nurses, you want to function at your best, even if you’re exhausted from navigating the demands of sandwich caregiving and work. You may be surprised that your employer has resources to help you maintain your good health as a person and staffer.
For instance, any time employees at Johns Hopkins University in Baltimore, Maryland need help in navigating any challenge that might affect their performance, Meg Stoltzfus, a lifespan service manager in the Office of Work, Life, and Engagement, or her colleagues, get into the mix. They provide referrals outside the institution as well as link people to various short- and long-term internal services. If school is unexpectedly cancelled, for example, the office is Johnny-on-the-spot with a “manning” service to facilitate temporary childcare at home. “We want to help employees make sure that their loved ones are getting the care that they need at home,” says Stoltzfus, “so that when they’re at work, they’re not worried or distracted but completely focused on the job.”
Whatever gold mine your human resources department yields, consider yourself lucky if you have flexibility in your job. Shoemaker, for instance, not only has an understanding boss, but she also didn’t need to be tethered to her desk when her father needed her most. As head of the clinical arm of her hospital’s IT function, she could use her laptop almost anywhere her dad was at the moment. Moreover, even though she had a two-hour commute in ferrying him to his radiation treatments, the sessions were at St. John’s so she was close at hand. Shoemaker also was confident that her husband and others, including a hospice nurse and aide, had her back at home. “I knew I had the support when I needed it,” she says.
Bring Along Your Children
Although you don’t want your children to feel shortchanged because you’re caring for Grandpa or Grandma, you also need them to buy into what you’re doing and what needs to be done. Obviously, age makes a difference as to expectations. But if they’re old enough for chores, they’re old enough to understand that in helping out, they’ll have more time with you.
“It’s important to sit your children down, explain what’s going on, and get them involved in the caregiving,” explains Abaya. “You need to say, ‘This is what I need from you, and this is what I then can do for you.’”
By tag-teaming, for instance, Shoemaker and her husband were able to cover her dad’s needs and still keep up with their son’s various activities, from academic meets to livestock showings. But they also were confident that at 12, Ethan understood the situation and could roll with the punches. He had seen his beloved “Papa James” change and knew that for the present his mother had to reprioritize the three men in her life. “For now,” Shoemaker says, “Dad had to be our primary focus.”
Save Time for Yourself
With time at a premium—and someone else’s vulnerabilities in your mind’s eye—your personal priorities and favorite pastimes likely take a back seat. However, attending to your own physical and emotional needs is not selfish; it’s simply good sense. You need to refuel routinely, especially when you’re expending emotional and physical energy in giving. “People feel guilty taking a little time and doing those little things for themselves,” says Goyer, “but it’s really just a practical issue. You have to do it, or else you won’t be able to care for others.”
Obviously, streamlining your routine and bringing resources to bear can help you make room for your personal priorities. But it’s not enough to say that you’re going to join an exercise class or take a long weekend. You want to plan so that it happens. Whatever the activity, plug the date in your app and keep it. “Scheduling is really, really important,” Goyer says.
Shoemaker, for example, is an avid walker who hikes the Susan G. Komen 3-Day Walk for the Cure every November. Even during the course of her father’s illness, she penciled in time for herself. But it wasn’t until his death in February that she finally could spend a lazy afternoon without worrying. Although Shoemaker struggled at first with the concept, today she’s at peace. “I’d take my dad back in a heartbeat,” she says. “But I know that he’s in a better place. It’s OK to be relieved.”
In the din of activity, it might be difficult to think of the positives in being a sandwich generation caregiver. But experts suggest that no matter the challenges, you’ll find them. Perhaps you’ll parlay an improved relationship or gain new perspective on yourself or this person.
For instance, even though Planken prays continually for guidance, strength, and wisdom in helping her mother navigate her struggles, she’s still impressed by the woman’s upbeat attitude. Even when Planken has had to point out how very lucky they all are that she’s alive with her mind, memory, and speech intact, it’s her mom who renews her daughter’s spirit. “My mom has always been very optimistic, and I’ve seen it clearly,” she says. “She calls me daily just to let me know that she wiggled her finger and feels incredibly better. She’s so thankful.”
As for Shoemaker, she learned that being a sandwich generation caregiver involved two versions of care: addressing her dad’s physical needs as a skilled nurse along with his emotional needs as a loving daughter. In merging the two versions, she not only kept her father comfortable, but also where he wanted to be—in their new house. “He had his dignity,” she says. “He knew he wasn’t alone in an institution. He was where he was loved.”