Educating Caregivers in the 11th Hour
It’s 10:40 pm, and after a long day of hospice nursing, problem-solving, and documentation, you are the on-call nurse for the evening.
It’s a scenario you know well: while this isn’t a patient on your caseload, you do your best to listen or read “report” and prepare yourself with the necessary knowledge to assist this family as they struggle with their role as caregiver for their dying family member. The frazzled daughter opens the door, barely greeting you, and you walk into the house and feel the anxiety and tension as you watch the family members attempt to position the patient for comfort. The patient’s daughter hasn’t slept well in days, and the house is cluttered with medical supplies, laundry, dirty dishes with leftover frozen pizza crust, and children’s homework. The patient’s daughter is trying to care for her mother, help her children with their schoolwork, and manage her career via her smartphone which never leaves her side. The caregiver waves her hand over the area and says, “welcome to my mess” with some apathy, but you can see the tears in her eyes. She describes herself as “fried,” and you can see the truths of her description.
The struggle for us as hospice professionals is to work within the context of the family dynamic. We are visitors in their home, and we are there to ease the physical, emotional, and spiritual pain of the unit of care – the patient, and the caregivers. Consider focusing on these action steps to ease anxiety and meet the needs of the patient and family in crisis times:
Start by Calming the Storm: Everyone, and I do mean everyone, can benefit by hearing that they are doing a good job, or doing the best they can. Take a moment to connect with the caregiver, make eye contact, and provide them with some verbal encouragement. Let them know that you hear them, and that you understand the caregiver experience is difficult. A few moments of eye contact can create trust between you and the caregiver – don’t underestimate the value of this step.
Ask “what’s the most important issue that we address right now?” Your objective assessment skills may be telling you to address one issue, but the worries of the caregiver may be an unseen, unknown issue that creates anxiety and causes discomfort, affects caregiving concentration and skills, and results in more on-call visit needs. It pays to ask the caregiver what concerns they have, and reassure them that no issue is too small. Education and information can alleviate anxiety, which results in calmer, more confident caregivers.
Ask the caregiver how they prefer to receive information. Apply your knowledge of adult learning – does the caregiver prefer to receive information visual, auditory, or kinesthetic learner? In other words, do they learn best by reading, hearing, or experiencing? Encourage the caregiver to take notes, draw pictures, and repeat procedures that have been taught to them.
Always leave written information for the patient and family to refer to in between visits. Revisit your patient education materials and make note of what to highlight with patients and families. Make sure that your education materials are easy for your patients and families to understand, and that the information left in the home reinforces what you have taught. Our easy-to-use caregiver education tools make your job easier, and can be found here. The feedback we receive from hospice professionals on our Pocket Guides has been awesome! When you need to provide education, and family members are tired and overwhelmed, caregivers don’t have the time or concentration levels to read even a small booklet in it’s entirety. Pocket Guides are well-planned, organized tools that provides information to families in doses that they can digest. Discover these tools that can make their lives – and yours – so much easier in the 11th hour.
And one more thing – you aren’t told this nearly enough: thank you for the beautiful and compassionate work that you do. You make the difference in so many lives.
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Also in Wings of Change Publications
From Heart-based Words to Meaningful Action: Transforming the Patient’s Hospice Experience Using the Nature Gave Us Butterflies Booklet
February 16, 2021
We’re celebrating the return of heart-based/heart-centered care - it was never completely gone, but let’s revisit the basics.
When I first started working in hospice, we had regulations, but there was more space to care. To spend time. To reminisce and connect and develop relationships. We were definitely practicing the concept of meraki.
Today, there is more pressure than ever to meet productivity standards, document well, and prove eligibility. We still put our souls into it, but we do so feeling more pressured and rushed.
Whether you are just starting in the hospice industry or you are an experienced hospice professional, we can't help feeling that pressure to perform, do more, be more. We don't have time to waste.
That's why it's so important to make the most of your time with the patients and their families. As we talk to our customers, the overarching theme always comes back to the stresses of the job mentioned above.
Hospice nursing turnover rates are 19%. That means one year from now, 1 out of 5 of your nurses will no longer work with you. Industry experts say that it costs between 1-2 years for new employees to be fully productive in their role.
The solution? Well-trained, highly engaged employees can reduce a company's turnover rate by 25-59%.
While employee education is a challenging, never-ending job, we'd like to give you a resource for training your staff to make it easier on your education coordinator and easier on your staff, too. The best part? It’s free!
Often, there is a chasm between a hospice professional's intentions to teach and actually teaching. Not because they aren’t doing their job - but because they are focused on the whole of their job - meeting everyone’s needs, all of the visits, the meds, the equipment, the caregiver issues - and it’s difficult to settle in and focus on educating the caregiver when the whole of their job is calling.
We set out to help the end-of-life professional practice heart-centered care. What does that mean? It means that we take the time to teach, support, encourage, listen, answer questions, connect, and be emotionally available. It means that you are transforming those heart-based words into action that benefits the patient and caregiver.
Then what happens? Your patient/family satisfaction rate and caregiver confidence increases. Caregiver anxiety decreases. And if your team member is trained well, she knows exactly how to deliver and highlight the important parts of end-of-life care.
That’s where Nature Gave Us Butterflies comes in. We’ve known for a long time that Nature Gave Us Butterflies, Hospice Edition is a game-changer when it comes to educating the patient and family. It is a touchstone in heart-centered care, serving as a reference that your professionals can return to over and over to reinforce their teaching between visits.
We want our customers to get every ounce of value and meaning from this booklet - part of the end-of-life professional’s toolkit. So we developed our new training guides that will be included in every order of Nature Gave Us Butterflies, Hospice Edition.
The training guides are designed to help your Orientation/Education/Inservice Coordinator train new and existing staff on how to use this booklet to effectively educate caregivers and reinforce their teachings. Here are some highlights of the training guide, which is yours for the asking! The training guides:
Imagine the peace of mind in knowing all of your team members are maximizing the use of this teaching resource while checking in with caregivers on the quality of their visit - each visit. It’s all available to you, free for the asking!
You can request your training guides right here.
You can see Nature Gave Us Butterflies, the touchstone tool for end-of-life teaching right here.
When used as the touchstone that they were developed to be, the training guides will ensure that everyone on your team is using Nature Gave Us Butterflies consistently. Training guides are available free to those who purchase Nature Gave Us Butterflies, Hospice Edition because we want you to squeeze every ounce of value out of our resources.
You can help your team members be consistent, reinforce their teaching, and improve your CAHPS survey results and patient satisfaction by using the training guides to maximize the benefit of Nature Gave Us Butterflies.
We’re in this with you. Let us know what you think!
Sources: www.builtin.com/employee-turnover-statistics
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When You Live What You Write: My Training Ground for The Whisper of the Fallen Oak
February 05, 2021
May 2, 2018 is emblazoned in my mind. My dad was being released from the hospital after suffering a low sodium-low potassium episode and his ability to care for himself was markedly diminished. His dementia was progressing quickly, and his needs went from mild to major within the period of a week. My mom was his caregiver every now and then; it was clear that this had shifted into a full-time job, and none of us were able to hide from my dad’s decline. It was front and center.
My otherwise (proudly) independent parents, who were planning a move and the sale of their house in June to be closer to me in a neighboring state, were faced with the need to move earlier than planned so I could be their support person nearby.
My mom grabbed their most basic needs from their home and we pulled up to the hospital drive, loaded up my dad, and high-tailed it to my home 6 hours away. They moved in with us for 6 weeks until their apartment was ready.
My parents were lovely house guests. They would sit on the porch when my husband was mowing the lawn and watch the activity of the neighborhood. Even in the midst of caregiving for him - along with all of the sadness and frustration - we will also cherish the funny moments. My dad would tell my mom that my husband was “the landlord” and they needed to watch themselves because he didn’t want to get “kicked out.” He stuffed his pockets with cookies for breakfast. He still wanted a beer every now and again. His sweet tooth which never existed prior to his Alzheimer’s diagnosis was in full force, requiring us to keep a lot more ice cream and cookies in the house than we did when the kids were small..
He also pocketed his prized coffee cup coaster he received from his last job at a war museum, proudly showing it off to the hospice staff. There were still glimmers of who he was peeking through the cloud of confusion and decline.
My parents at our wedding reception, 2017.
He talked to my mom’s pig figurines and called them “police dogs.” He conversed with people on television. He offered to share his meals with “the others” in the “hospital." He thought my mother was his mother at times, and then at other times he would sweetly reflect on how good his wife was to him.
There were, of course, many moments that felt like years. He clung to my mom and felt safer when she was within his field of vision. If she would go outside, he would shuffle throughout the house looking for her - she was his safety and security. He forgot how to use a fork. He lost the ability to understand simple commands like “sit down” or “stand up.” As many of you know, one never knows what to expect next, and I feel fortunate to have a mom who copes well and is able to find the humor in the midst of what is really, well . . . the loss of a human being right before your eyes. My sweet little dad, disintegrating and regressing, was slipping away.
As a writer, I knew I was in my own personal version of a topic incubator, especially writing for the end-of-life care industry. While I thought it would be difficult to face these topics, my overwhelming takeaway from the experience with my dad is this: caregivers of persons with dementia need support. Not just a little support, not just a check-in - but real, consistent presence.
Healthcare professionals who provide services to those living with dementia and their caregivers know this. They teach it often. During our experience with my dad, it became clear to me that this information - though taught - needed a way to stick.
There were times where we were so overwhelmed, we were unable to retain it. There were times when we felt no one understood the depth of our pain. There were times when people in stores and restaurants, not understanding his dementia, looked the other way not knowing how to respond. There were times of isolation, sadness, and hopelessness. My mom, in her 70s, functioned on very little sleep.
Experience tends to map out our next steps in life, so I set out to write a booklet that was a companion to those caring for their loved one who has dementia. The result is The Whisper of the Fallen Oak: A Family’s Guide to Early, Middle, Late and End-stage Dementia. Using the life cycle of the oak tree metaphor to explain the stages of dementia, the booklet gently guides caregivers through the decisions and emotions of the caregiver experience.
In every stage of life, our loved ones have value and worth. When the challenges of caregiving are intense, this booklet offers hope and understanding in the midst of overwhelm and exhaustion. The booklet gives step-by-step suggestions for action items that need to be taken care of each step of the way. Covering topics such as anticipatory grief, legal and financial planning, advance directives, nursing home placement By knowing what to expect, we can decrease caregiver anxiety and increase caregiver confidence.
It is my hope that this booklet can ease the pain of others during a sometimes lonely, exhausting, and overwhelming time in the lives of caregivers. Visit our new booklet here to see how it may help you, your clients, or someone you know who is caregiving for someone with dementia. Be sure to send us your thoughts on the booklet, too.
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Spirituality: Honoring the Deepest Needs of Patients, Caregivers, and Team Members
October 12, 2020
Often in end of life care, team work is valued and practiced daily. Nurses tend to the patient’s physical needs, social workers tend to social and emotional needs, and we leave the spiritual and religious aspects to the chaplain. While each of these areas of expertise is important, spirituality is the area that most team members find off limits and will gladly turf to the chaplain to handle. They may feel that their religious backgrounds aren’t “strong enough” or or feel lacking in knowledge about the Bible, history, beliefs, religions, and other culture’s religions to have those conversations, so they hand it over to the resident “spirituality expert” - the chaplain.
But what does your team chaplain want you to know about spirituality?
There is a difference between spirituality and religion. Practicing a religion can be a part of someone’s spirituality, but the concept of spirituality is much larger than attending a church service or saying a prayer. The etymology of the word spirit traces its root meaning back to the words life, breath, inspiration, respiration, and life. Ultimately, one definition of spirituality is that which brings us or fills us with life.
While the chaplain will help the patient, caregivers, and family members with religious practice and prayer, they are also keenly aware of how far-reaching spirituality is. For example, some people may feel far more in touch with a higher power when fly-fishing or riding their bike than sitting in church service. Gazing at the mountainside or sunset may help patients and family members feel connected to their spirituality over gathering in a building we call church.
What do your patients, families, and caregivers need to maximize the meaning of spirituality - that which gives us life? Beyond just surviving, how can they live in the time they have left? While the chaplain is trained and very able to hold the deeper conversations with patients and families, we can support the chaplain’s work by being intentional in our practice of the following:
It’s OK to sit without words, listen, and be present. As nurses, social workers, aides, pharmacists, doctors, and bereavement counselors, we often feel the need to have all the answers to all the questions. While it is important to help the patient and family with answers to their questions, sometimes feel our own internal pressures.
We may feel self-conscious with questions we don’t feel are within our expertise. When people are dying, what we convey in body language, presence, and eye contact may be more important than our words. You don’t have to have the answers 100% of the time. It’s OK to not know. It’s ok to sit with wonder. It’s OK to trust that the answer will come in time.
In reality, we are all carrying out our expertise to help support those meaningful moments of resolution, joy, gratitude, love, and forgiveness as patients transition.
The chaplain needs your help in creating an environment of openness, willingness, and truth. You know that feeling of fulfillment you get when you witness the patient and family share intimate moments, deep feelings, and meaningful words? Those are the moments end-of-life professionals carefully make space for and support in the patient’s life.
If the patient were in too much pain, those moments of deep connection may not occur because the patient would not be able to focus on emotional needs while their pain isn’t under control.
If the caregiver doesn’t have a comfort level and is scared to be alone with a dying person, those moments may not happen because anxiety gets in the way of sharing meaningful connections.
In the absence of trained and willing humans in their lives, many patients and family members may miss these meaningful opportunities to share memories, speak the apologies and forgive, and express the love and connection. Because end-of-life professionals have this experience, we gently encourage the communication and resolution between family members. When team members work toward physical comfort and encouraging communication in the family, they set the stage for those moments to occur. Ultimately, we are all working to take care of physical and social/emotional needs so that patients and families can touch their spiritual needs of connection and making meaning of their life and their death.
It’s not just important - it’s necessary - to honor your deepest needs when you work in hospice. How can you continue to honor your own deepest needs, feeding your soul and filling your tank to be the best service provider you can be? How is your spirituality expressed? What brings you life?
Tapping into your own spiritual, life-giving needs and fulfilling them is an investment in your present and future self. It creates a person who gives to others while taking care of herself. It creates a person in touch with her life’s purpose.
Pause to feel the wind on your face and the perfect light at sunset. Listen to the leaves blow through the neighborhood on the pavement. Take in the beauty of the lights in the city, the cattle on the country hillside, or the chill in the air as you sit on the porch. When do you feel most alive? Answer this question and do more of that.
There may have been a time where your team chaplain supported you after a difficult or challenging day. Today is the day to say thank you for their kindness, selflessness, and communication skills. A helpful and supportive team member is worth their weight in gold.
Thank you to all the chaplains who are present through the uncomfortable times. You and your willingness to hold the space for others to express emotions are invaluable additions to the team.
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