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  1. My friend's eyes' filled with tears as she told me the latest on her mom, "She keeps accusing me of stealing her things! Yesterday she said I came into her room and took her socks off while she was asleep." She smiled wanly. "It would be funny if it weren't so terribly sad." I gave her a hug and we finished filling up our coffee mugs at the restaurant's drink station. I listened for the next thirty minutes while she went through they symptoms her mom was going through which included some of the more classic signs of early Alzheimer's: mood swings, misplacing things, unusual wandering at night. For the past year, Jennifer had been caring for her mom, first in separate households, but more recently she moved her mom into the guest room of her own apartment so she could keep an eye on her. Even though Jenn was a very competent and compassionate orthopedic nurse, this was completely different from what she had learned in school. Having her mother accuse her and be angry with her stirred up a deep sadness, one that acknowledged that the mom she had known all her life was slipping away, being gradually replaced by an unfamiliar lady that occupied the same physical space. It was unsettling and made her wonder out loud if she knew anything at all about Alzheimer's. Having our loved ones experience any serious illness can make us question our own professionalism since we often feel that we should be able to cope with any sort of medical crisis. Alzheimer's or any type of dementia can be particularly trying since it usually involves a long term mental and physical decline that presents unique challenges to the caregiver. Jennifer outlined a few of those: caregiver exhaustion, depression and discouragement. As a Parish Nurse, I work with people in an ongoing Caregiver Support Group. I encouraged Jenn to attend and also suggested some books she might read that would help her reframe her experience from the more familiar mastery that exists in being a professional nurse to the more vulnerable role of daughter and caregiver seeking answers and help on a long journey. I shared with her some of the more difficult trials we discussed in group. Second Guessing Decisions Members of the group express frustration with all the various options for care and with the sense that they are never sure of having done the right thing. An example is the decision not to do a tube feeding. They talk about how that is the easy part-it is harder making decisions about changing food texture, how and when to hand feed their loved one, food refusal and how to react when choking becomes more frequent as the disease progresses. Sleep Disturbances Missing one night of sleep occasionally can be disruptive, but ok. But having every night disturbed leads to excessive fatigue, lack of ability to cope with daytime duties, and depression-for caregivers and for their care recipients. Working with medical professionals to find helpful routines, drugs and respite care can be a partial solution, but chronic loss of sleep may be the #1 hazard of family caregiving. Family Disunity Sometimes people just don't agree on what to do. And very often one family member is left to do the lion's share of the work-bills, doctor's appointments, taxi service, advocacy. If other relatives participate, it can often be hard to coordinate and variety is not the spice of life for a person with memory issues. Making Decisions About Treatment For Co-Morbidities When a dementia patient has advanced heart disease, or their diabetes is out of control because they eat too much sugar, or their routine preventative medicine is due, or they need a joint replacement but rehab would be a real bear-these decisions get complicated. Deciding they are a DNR might be a first step, but there are lots of steps on the road between onset of memory loss and the time when the DNR decision goes into effect. Guilt. Guilt. If sleep deprivation is the #1 hazard of family caregiving, then guilt is the #1 feeling associated with it. Because caregiving is often so intense, decisions must be made and life set into a series of priorities. When finances enter the picture, options can be further limited. The caregiver may feel squeezed in a vice grip of life-stuck between spouse, children, grandchildren, work, time for self-renewal and worship, caring for their own physical bodies, and having some fun. Seeking to maintain a spiritual balance, a life-focus, can become the greatest challenge. After a second cup of coffee and some time to vent, Jenn's eyes cleared up, her shoulders seemed to release some of the tension and she leaned back in the booth. "You know what's hilarious? Mom keeps loosing her underwear! I can't find it in her drawers or in the trash can. Where do you suppose she is stashing it?" We both shook our heads in unison and laughed until we cried. Joy Eastridge
  2. "If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." James 1:5 The music was loud and surrounded me as I sat in the football stadium turned music venue for a community-wide concert. I felt my phone vibrate in the seat of my canvas arm chair and I glanced down to note a text message from an unfamiliar number, asking me to call. I found a quieter spot and listened as the emergency room nurse told me of a very sick patient, adding, "The sister asked for you by name." Knowing the person involved and his long term health issues, I asked, "Is he dying?" The nurse hesitated a second before answering, "I think so." I gathered up by things, said quick good byes to friends and family and began the walk to my car. Fifteen minutes later, I pulled back the curtain of the ER treatment room, holding a fresh package of tissue and my pocket Bible in the other hand. Mr. R laid on the gurney with a neck immobilizer in place. Dried blood was matted in his white hair and seeping onto the sheet below. His face also showed evidence of trauma and a endotracheal tube protruded from his mouth, snaking over to the respirator two feet from the bed. I briefly took this in before reaching over to hug his sister and hold her while her shoulders shook with both sadness and shock. She took one of the tissues I offered and told me the story of how they had gone out to lunch together and then he simply tripped on the curb at his house when they came back. At the time, he appeared dazed but unhurt, having bounced his head hard on the cement. He was able to get up and make his way inside where she brought him an ice pack, got him settled, and left to go to her home, just a few blocks away. She later found out that he made some lucid phone calls to his children and told them how he had hit his head. But two hours later, when she called to check in, he didn't answer the phone. She hurried on over and when she arrived, found that he had somehow fallen again and this time, opened a gash on his head, possibly by hitting the granite counter top in the kitchen. He was on the kitchen floor in a pool of blood, drawn up into a fetal position, arms twisted in the awkward posture indicative of brain damage. As she dried her tears, we stood around the gurney and prayed. We read a Psalm together and said the Lord's Prayer. After she had a few minutes to gather herself, I asked what the doctor had told her. "They said he cannot recover from this," she answered. "He has a big bleed in his head." We talked more about what his wishes were and she told me unequivocally that "He would not want anything done to extend his life." Mr. R had been suffering from progressively worsening chronic obstructive pulmonary disease (COPD) and found each day a chore with breathing treatments, oxygen, difficulty sleeping, anxiety. His sister knew he was tired of fighting. I had also spoken with him about his wishes. Two months before this event, when his sister was gone on an extended vacation, I called to check in and see how he was getting along in her absence. In the course of the conversation, we talked about what he would want if there ever came a time when he couldn't speak for himself. "Nothing. Absolutely nothing," was his firm response. The ER nurse came in and said, "We have a bed for him in the ICU. He will go up there and you all can stay in the waiting area while they get him settled." I looked over at Mr. R whose choreoathetosis caused almost rhythmic leg movements. I touched his limp, cool hand and then, looking at his sister asked, "Do you think he would want to go to the ICU? Did you get a chance to talk with the doctor about his wishes?" His sister shook her head from side to side and said, "He was very clear about not wanting anything done to extend his life. And I have just talked with both of his children who confirm that we are not to do anything to make this go on." The nurse looked surprised but said, "Let me get the doctor so you all can have a discussion about this." While the nurse was gone, I explained what would happen if they extubated her brother. I explained the sedation that would be given and the possibility that he would continue to breathe for a period of time and need to be transferred to a palliative care unit for care until he died, reassuring her that through it all, the doctors and nurses would work hard to make sure that he had the best care possible to minimize suffering. When the doctor came in, she talked quietly with the patient's sister, ascertaining that his wishes were well known and that the family was also on board. She clarified that no recovery could be expected from such a massive blow to the head and explained that his brain was slowly herniating through the natural opening at the base of the skull. Once the decision was made, she asked that we go into the family waiting area while respiratory therapy came to help take him off the vent. As we were preparing to leave the area the minister of visitation arrived. We held hands in a circle surrounding Mr. R as he read from a book of prayers, a "Prayer of Release." We stayed together in the waiting area, sharing memories and talking about what had happened until the nurse came back to summon us to the bedside. Mr. R continued to breathe at intervals with prolonged spells of apnea until he finally took his last breath, free to move on from there to begin another life in eternity. The experience left me with questions and some concerns. I wondered about those times when the parish nurse was not able to be there. Would someone else be able to ask the question about the patient's wishes or would he have simply gone on to the ICU? Joy Eastridge, RN, BSN, CHPN
  3. "Please pray with me," my patient pleaded as I gathered up my bag and prepared to leave our admission visit. The social worker and the patient's caregiver had already stepped outside and were talking on the porch landing. I looked at my patient whose eyes betrayed fear over what was to come after being diagnosed with an inoperable and widely metastatic cancer just a few days before. Still relatively young in his late 50's, he could see and feel that he did not have long to live. I put my things down and sat beside his bed in the chair I had occupied for the previous two hours while the hospice social worker and I went through the admission process with him. He offered his hand and I held it, praying a simple prayer for comfort and peace. As professionals, we are called to provide care for the body, the mind and the spirit. It is not often that we are asked to do something as overt as praying with a patient-but it does happen. How we feel about this can vary widely depending on our own faith walk and what we think about sharing that with others. Admittedly, in this particular situation, we had two hours of talking, listening, getting to know this gentleman; we knew where he was coming from. There were religious symbols in the house and he verbally confirmed his particular faith during our assessment. Hospice may be singular in the nursing realm in that spiritual care is an expectation, an active part of what we do. But in all fields-everything from office nursing to ICU to surgery-we meet our patients in times of crisis and fear. Spiritual comfort, when requested, can be a very helpful part of excellent nursing care. In practical terms, however, the very thought of praying with someone may send shivers of unease and discomfort down the staunchest nurse's spine. What if they are Christian and we are not? Or Muslim, or Jewish or Hindu, or Buddhist, or Agnostic? How does all that work and how do we help without hurting? There are no easy answers to this question but let's explore together some ways we can prepare to offer spiritual care if requested. Listen first People will very often answer frankly and let you know what would be helpful. Ask a question, "How would you like me to pray?" or "What do you want me to pray for?"Sometimes just holding their hand and having a moment of silence can bridge the space between us and our patients, helping them to know that we are on their side and will help however we can. Plan ahead for how to respond If you are uncomfortable with any type of faith discussion, it is important to still allow the patient to feel validated. If you are unable to pray or provide the comfort they seek, have a Plan B ready. Tell them, "I know that this is a difficult time. Let me call the chaplain to talk with you about this. Thank you for sharing with me." Thanking them for sharing helps them not feel embarrassed for asking and lets them know it's ok. In planning ahead, we might also consider using some more universal prayers, things like "The Serenity Prayer" or a beautiful poem that speaks to us or the 23rd Psalm if the patient is Jewish or Christian. Be respectful While providing nursing care, part of our professional duty is to give spiritual care-according to the patient's needs and beliefs, not our own. So this would not be the time to proselytize but instead, to respond according to the faith journey that the patient has expressed, letting them guide the conversation. If we believe firmly in our particular faith (and to be a good practitioners of our faith then we surely must!), it can be hard to simply accompany the faith journey without interjecting our own beliefs, but this is one of the ways we show care and compassion in providing spiritual care. We can remain true to ourselves and at the same time be true to our charge as excellent professionals who seek to offer healing to the whole patient: mind, body, and spirit. Use the gift of presence and touch as part of the whole approach We have all known the patient who "lays on the call bell" or calls the office every day or has 101 complaints when they talk with us. While frustration can be our knee-jerk reaction, our professionalism calls us to look deeper, to move beyond the surface complaints and to listen with the ears of the spirit, asking ourselves, "So what is really going on here? Is there something I'm missing?" Loneliness, fear, pain are all aggravated by and expressed in illness. As nurses, we cannot underestimate the power of the gentle touch on the shoulder, the eye contact, the active listening that says, "I truly hear what you are saying," or the simple, "I'm sorry you are going through this." After our prayer, I reviewed our plan for a return visit and reminded my patient of our plan of care and asked him to call with any questions or concerns, hoping in this way to give him tools to manage his anxiety. Then I told him, "We will walk this journey with you." Those words seemed to help and I saw his shoulders relax against the pillow, the tension easing for the moment. You may have experiences with being asked to provide spiritual care. How did you feel about it? What did you do? Do you have any tips that might help other nurses in the same position?
  4. jeastridge

    Parish Nurse in Transition

    When Granger Westberg started Parish Nursing back in the mid-80's, medicine was very different than it is now: EMRs were unheard of, people had long hospital stays for what we now consider same day (same morning!) surgeries, costs had yet to get out of control, pharmaceutical companies were not profit centers and advanced interventional care, transplants, genetic-based therapies, and other cutting-edge medicine were just glimmers on the horizon. As medicine and nursing have continued to change over the years, Parish Nursing has also evolved. We have gone from a fairly tight circle of influence that was largely defined by a particular congregation to a ministry that often reaches out in a variety of directions, helping to care for the community at large. Now often known by the appellation "Faith Community Nurse," Parish Nurses are making inroads at being one of the most important pieces of the transitional care picture in modern medicine. The FCN is uniquely positioned in the community to help accomplish the goals of serving the community and promoting health and wellness for the larger area. In churches, schools and community centers, FCNs work closely with individuals and groups. With front row seats to times of illness, wellness and everything in between, some of the ways FCNs serve include: Promoting Emotional and Spiritual Wellness through Support Groups By hosting Grief Support Groups and Caregiver Support Groups, the FCN contributes to improved community mental health and general well-being. By being able to identify problems early, the FCN can intervene before deeper problems develop. He/she can play a role in suicide prevention and mental health crisis identification by making appropriate referrals sooner. Additionally, the FCN helps keep mental health care as part of the whole picture of wellness, not just a crisis mentality with the emergency room as front line. Diabetes Prevention and Improved Compliance with Treatment Knowing their congregation's health and their goals, helps the FCN support the educational process that is ongoing in the health system and can identify reasons for non-compliance along with potential ways to overcome that chronic problem. Additionally, the FCN knows all the resources available in the area-from the health department, the doctor's offices, to seminars, to the YMCA. They are able to refer people in appropriate ways. Long-term Management of Hypertension The FCN helps monitor BPs, provide for home monitoring by securing devices and training people to use them. The FCN is also uniquely suited to re-enforce medication management, assist with compliance issues and assist with financial hardship associated with drug costs. Weight Management for Adults and Adolescents The FCNs consistently offer programs to help people improve their overall wellness: walking programs, Weight Watchers, the Daniel Plan, Hiking Clubs, sponsoring sports teams through City Parks and Recreation, promoting YMCA and other gyms, sponsoring exercise classes at the church, etc. Together, these activities add up to increased activity and better all-around health for our church families and the community beyond. The FCN generally plans activities starting in the home congregation but opening them to people in the general community. None of these activities is ever closed off to members only-they are always open and inviting to anyone that would like to participate. Additionally, the FCN is able to cooperate with city-wide or state-wide initiatives, joining more regional programs and encouraging the congregants to participate and bring others along into a healthier lifestyle. Opioid Crisis The FCN is in an important leadership role as they work together to address the current opioid crisis. All persons involved understand that this is a multi-layered problem with no simple solutions, but as liaisons to their communities, FCNs are uniquely positioned to make fast-track improvements and to implement programs that are effective. He/she can determine how to best address this national crisis in the confines of that particular congregation's needs and begin work in a multi-faceted way: prevention with children, education with pre-teens, crisis-intervention and treatment with addicts and support for associated family and community members. Advance Directives/Living Wills The established FCN has the trust of the community. He/she is able to offer opportunities for people to better understand the decisions they will face at the end of life. By working often with the older adult population, FCNs are uniquely positioned to make a difference in how we spend resources during the last few weeks of life. Access to Health Care The FCN serves as a triage nurse within her community. Often members ask for referrals, discuss insurance concerns or ask for financial help in addressing access to care. The FCN can help steer people in the right direction and distinguish fact from fiction for patients who are unsure. Transitional Care This role has been growing larger over the past few years as the patients are leaving inpatient stays sooner and with greater acuity to recover at home. FCNs have the ability to call or visit, to do medication reconciliation, to make sure patients have their prescriptions filled, to double check on equipment needs, nutritional needs and appropriateness of care. They are particularly well-equipped to answer triage questions and help patients know whether they need to return to the point of care for additional help. The FCN is an important part of the new health care system. While knowledge has expanded and modalities of interventional care have grown by leaps and bounds, hands-on care and connection with compassion have not always kept pace. The nurse in the faith community is the perfect person to help address this disconnect and build bridges of care.
  5. I rang the doorbell a second time-holding it just a fraction of a second longer than usual. I could hear the chiming inside and I knew the elderly couple were at home. But the dog barked loudly and I suspected that they had trouble hearing. After several more minutes, Mr. P cracked open the door, smiling widely when he recognized me as the Parish Nurse from his church. "Hello, Mr. P! How are you? How is Millie* doing? Do you mind if I come in a visit a little while?" I had come to visit after a church member called to say that Mr. and Mrs. P had stopped attending Sunday School and seemed confused the few times they came. Previously very active, the couple seemed unkempt and unable to answer basic questions. "Oh, she's right in here. Come this way. I'm so glad you are here. We are just in here watching TV." I stepped over a pile of feces and noticed the dog penned in the kitchen, barking frantically. He did not looked pleased with my intrusion and barred his teeth with a growl, so I made a point of staying clear and followed Mr. P into the family room where I was met with more dog waste odors, along with piles of newspapers scattered on the floor, and leftover paper plates, smeared with the remains of forgotten dinners, piled up on a coffee table. I sat down beside Millie and introduced myself, gently taking her hand. She looked over vacantly at me. I told her I had brought a casserole from the church and chatted a little while with them before getting up to put the food in the refrigerator. Mr. P held the dog while I placed the dish beside a nearly empty gallon milk jug. Besides condiments and a small bag of wrinkled carrots, there was little else. I asked Mr. P about his son and how to contact him. While Millie was initially quiet, she warmed up and began telling me about her job and how she planned to go back to work, though I knew she had retired many years prior. Mr. P smiled. He answered questions that let me know he was still aware of date, time and general information but before I said any more he volunteered, "We are having a hard time. Millie can't remember much of anything at all and I'm not much better off myself." I asked permission to call their son and he said that would be fine. "But," Mr. P added, "he's so busy with his job. He don't come around much. And he lives away off." I called the son from my car. He lived several hours away and had not been to visit in six months. Meanwhile, he talked with them on the phone every Sunday. I could tell that he really had no idea how much things had deteriorated in that interval. I told him a little of what was going on and he assured me he would come in that week-end and take care of their needs. "So what do you think I should do? Is it time to move them out of the house? You know, Daddy built that place and he has told me that he won't move out until the hearse comes by to get him." As a Parish Nurse or a nurse that is working with a family like this, what do you do? Of course each situation is different, but there are some general principles that help us help families who face this type of situation: Making a financial assessment when possible helps to determine direction. Without having too many specifics, a nurse can help . Financial resources do play a considerable role in options for elder care. Empowering the family to work together to make decisions that make sense to them. They know their family culture, values, circumstances. Providing as many feasible options as possible and let people make decisions as long as they can. Keeping in mind that while safety and cleanliness are worthwhile goals, there are many ways to achieve these goals where people can still maintain some autonomy. State assistance programs vary widely from state to state and location to location so it is important to know how to access and refer to available social service programs. If families are unable or unwilling to provide eldercare then Adult Protective Services must be notified. As nurses, we are often called into difficult family, neighborhood and professional situations simply because we are medical and in a helping profession. Helping families through these difficult times of adjustment can be a real gift to them so it's important for us to know how to prioritize and plan. In a situation such as the one I described, it is so tempting to want to pull them out of their setting and into a more "safe" environment. As nurses we can lean toward wanting to "fix" things for them, but studies show that people are happier longer staying in their familiar surroundings (nia.nih.gov). In this particular case, the son came and was horrified at what he found. He was able to pay for a professional cleaning service to come in; he gated the back yard for the dog and provided some outside shelter; and he hired a neighbor to come in three times a week to cook a meal and do some grocery shopping. These simple interventions put Mr. and Mrs. P back on a path to well-being and better coping. They still continued to decline and experienced repeated hospital and ER visits, but with the neighbor there, the son was able to monitor things from a distance and make adjustments as needed. I also stayed in touch with all of them and provided assistance from time to time. In this setting, the son had limited financial resources, but he was able to obtain legal power of attorney and function as a supervisory caregiver for his parents. They owned their home, so even though they did not have a lot of savings, their social security income was adequate to keep them aging in place. But what if the son had not been willing or able to help out? When that is the case, the care becomes much more complicated. Generally, the levels of care include the following in order from least care to most: At home, independent, able to do all ADL's. At home but requiring cues and reminders, assistance with meals, ADL's appointments. Sometimes a maid or an occasional companion. At home with regular care coming in for several hours a week. Dependent for ADL's, meals, all medication management and transportation. Facility for independent living with meals provided but little assistance in the individual apartments. Facility with assisted living. Private pay. Must be able to transfer and do some ADL's but some assistance provided with all needs. Nursing home facility. Paid for on a limited basis when for rehabilitative services. Otherwise, private pay. Maximum assistance provided. Higher level of complexity cared for. I visited Mr. and Mrs. P again several months later. Mr. P opened the door and told me the Meals on Wheels volunteer had just left. He pointed toward the kitchen where two styrofoam containers sat side-by-side. The house was still cluttered but now leaned toward "homey" instead of hazardous. What about you? Have you had some eldercare successes and some not so successful outcomes? *Name and some facts changed to protect privacy.