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Guidance, Strength and Comfort for the Journey No One Should Walk Alone Companion Hospice Caregiver Crescent Moon Harbor J. Wallace
Crescent Moon Harbor Your Hospice Caregiver Companion Welcome to Crescent Moon Harbor Guidance, Tracking, and Gentle Support Through Every Day This is hard. Here’s something that might help.
Crescent Moon Harbor Foreword If you’re holding this book, it means you are showing up for someone in a meaningful way. Caregiving is not always easy. It asks for patience, resilience, and compassion—often all at once. It can be rewarding, exhausting, beautiful, and challenging all in the same day. This book was designed to be your companion. A place to keep track of what matters, to lighten the mental load, and to help you feel a little more in control when things feel uncertain. But more than that, it’s a quiet reminder: you matter too. Caregiver self-care is not selfish—it’s important and necessary. Taking care of yourself allows you to continue showing up with strength, clarity, and compassion. Even small moments of rest and care can make a meaningful difference. You deserve support. You deserve rest. You deserve moments of peace, even in the middle of responsibility. Use this space in whatever way works best for you. There’s no right or wrong way— only what helps you keep going. You are doing something incredibly important. And you are not alone. 1
Crescent Moon Harbor Disclaimer A Gentle Note to Caregivers This companion was created from personal caregiving experience, research, and a deep desire to support others walking through hospice and end-of-life care. I am not a doctor, nurse, therapist, attorney, or licensed medical professional. The information in this companion is not intended to replace medical advice, diagnosis, treatment, or the guidance of your hospice team. Every person, family, and hospice situation is different. Please always follow the instructions, policies, and recommendations of your hospice providers and licensed healthcare professionals. If you are ever uncertain, concerned, or feel something is wrong, contact your hospice nurse or medical provider immediately. My hope is simply that these pages help caregivers feel more prepared, more supported, and less alone during an extraordinarily difficult time. This publication is intended for informational and organizational purposes only and does not constitute medical, nursing, legal, or professional advice. The author is not a licensed healthcare professional. Readers should always consult qualified medical providers and follow hospice agency policies and patient care instructions. The author and publisher disclaim liability for any loss or risk incurred directly or indirectly from the use of this material. 2
Crescent Moon Harbor What to Expect in Hospice Most hospice caregiving is at home so the nurse will help you decide where your family member will want to stay, i.e., in the bedroom, living room. The delivery of the equipment will probably occur during the second week so you’ll have time to move whatever furniture that needs moving. The First Week - Once you’ve called hospice, your first week will include a visit from the facility admissions nurse. There will be papers to sign and a few decisions to make. You may also receive your initial nurse visit…even before the medical equipment, i.e., hospital bed, oxygen generator, etc. (DME) arrives. The nurse will get to know you and your family members. She will probably establish the visitation times, give you her phone number, the facility phone numbers, the initial medications list and instructions and where the meds will be filled, i.e., the pharmacy the hospice uses. She will also answer any initial questions you may have. What is included here is from my personal experience. Yours may differ in some or many respects so please know that this section is simply a way to provide some information on what’s next for your hospice experience. Don’t be afraid to show your emotions and fears. I cried during most of the first visit, the nurse was wonderful and allowed the time I needed to go through all of it. You will receive a copy of your facility’s book explaining hospice care in general--what to expect during your family member’s time in hospice. Read all the documentation the facility provides; it will have answers to many of your questions about what hospice is and what to expect clinically during your hospice experience. A list of additional resources may also be available in the facility information packet. 3
Crescent Moon Harbor - Initially there will be so much happening, many of your questions will be pushed aside as things begin to ramp up. One document you will receive from the hospice facility is the Do Not Resuscitate (DNR) form. Place it on your refrigerator door in plain sight. As noted in your hospice documentation, hospice care does not utilize resuscitation; rather, it focuses on allowing your family member to pass peacefully and naturally. Having the DNR clearly visible ensures that your family member’s wishes are respected without any chaotic or invasive medical interventions. Questions to Ask Other questions you may have: How can we notify the power company that we have an oxygen-dependent household? Will there be oxygen canisters provided in case of extended power failure? Is the DME provider available 24/7? There are no dumb questions, anything you’re concerned about is valid. You can use The Questions to Ask page to record your questions as they occur during this time. What Changes You May See One of your first questions will be when and in what situation can I or should I call hospice. The nurse will give you guidelines about when to call hospice and when to call her. Regardless of the page in this book, follow her instructions always. - After everything has settled down and you begin your routine you may notice that your person is showing signs of peace, relief and ease. Hospice meds are great for easing your loved one’s pain and concern. The pain medications may reduce pain to the extent that sleep is easier and distress is removed to a large degree. Some medications may also make someone feel very well, indeed, and eating and general happiness might improve for a while. This is a wonderful aspect of hospice--making less pain and stress and more ease and relief. 4
Crescent Moon Harbor And, Finally, Take Care of Yourself - You are doing something that’s wonderful, giving, brave but also lonely and stressful. Don’t forget to take advantage of the pages in this book that are designed for you to take the time and space to help you manage your hospice time. Always keep in mind that hospice is about comfort not cure and now is your opportunity to spoil your loved one within the guidelines provided by your hospice provider. And please be aware that hospice provides respite care for when you feel stressed and in need of some time to recover and regroup. This option is available for you, ask your hospice nurse about Hospice Respite Care. Eventually, your loved one may eat less, sleep more and generally feel less inclined to talk. Some medications may cause confusion and there will be good days and bad days. And even though your person isn’t talking much now, hearing continues. 5
Crescent Moon Harbor Initial Questions Initial Questions
Crescent Moon Harbor A Guide to the Clinical Pages This is also a good place to keep a list of helpers and volunteers. The form should be completed at the beginning of your hospice time. changed when new nurses or aides are added. It could be Phone List - Even though most of the phone numbers you need are probably already in your phone, having this list provides a central place so that you don’t need to search for specific numbers when you need them. Helpful Document Location - There may be a variety of paperwork you will need during hospice. During a stressful time locating necessary documentation might be difficult so this page is provided so that you can record where these documents are located. Medications List/Dosages - Once hospice care begins, the hospice doctor will prescribe all of the medications needed. Other meds previously prescribed outside of hospice by your family doctor will now be managed and prescribed by the hospice doctor. Hospice Team - When your person goes into hospice care there will be a team of medical professionals and aides assigned to help. Team members may visit twice or three times a week to discuss care and answer questions. Depending on your hospice provider, aides may be able to assist with personal grooming and comfort care services. Be sure to add any additional information pertaining to the hospice facility, i.e., back up phone numbers. The Social Worker can be helpful with situations in your area. If your family member is on 24-hr oxygen, the power company should be made aware of your need for power to be restored as quickly as possible. A letter from the facility/social worker can help with this. 6
Crescent Moon HarborAdditionally, aides are often available to help with hair cuts, pedicures and massages--again, this is a place to record their visit if you want. Routine Medication Log - This log provides one central place to record all medications given. It will be helpful so the nurse knows not only the hospice medications but all meds. - As the primary caregiver you may not need to track everything on this log. Most of the clinical information will be part of each nurse visit. If, however, you want to share this information this page provides space to record observations and information you may wish to share with your nurse. Also, the hospice-specific meds are sometimes filled by a pharmacy specializing in those types of medications while standard meds can remain with the family pharmacy. The form has places for both phone numbers. All of the medications can be listed on this form along with dosages, times to give, refill information and maintenance, i.e., needs to be refrigerated. Some hospice medications may be prescribed with a dosage range. Always follow the instructions provided by your hospice nurse or physician. - Occasionally an aide will accompany your nurse to help record the information or just simply to be available for whatever is needed. The nurse will collect all the clinical data and this page is where you can also keep track of the information. If the nurse changes or adds any medications you can record it here. - There will be many items provided during hospice care. Keeping track of all of it is essential because most of it needs to be returned later. This list is the minimum but space has been left for additional DME when/if it’s needed. Be sure to note the supplier and the phone number. The supplier can also provide information for using various items. Durable Medical Equipment(DME) Nurse/Aide Visits Daily Care Log 7
Crescent Moon Harbor Aseparate Nurse Visit page is part of this book. Daily Activities - This page is probably closer to your “normal” day. Preparing meals, helping with daily activities, watching TV, or just being there while your person is napping may be a large part of your day. Comfort Response Plan - One of the most frightening occurrences can happen when you’re alone in the middle of the night. This page is designed to help you pause, assess the situation, and decide on the next appropriate step. When in doubt, call hospice. Your hospice team would rather answer a question early than have you worry alone. - Again, this is just a list of possible situations. Clear this list, add or subtract from it according to facility procedures. Here is where you can take the time to reflect on how your day is going and record any calls or visitors. These steps should be reviewed with your nurse and the facility to ensure that they follow specific facility procedures. - Like the phone list, you may already have a working calendar in your phone or a separately maintained area, this log will be a good place to keep up with specific hospice-related appointments, like when you ordered medication refills or when an aide is coming to give a hair cut or pedicure. - The intention of hospice is to allow passing at home with family. This page is intended to guide you through the steps to take when you believe your loved one may have passed. Follow the procedures provided by your hospice team and contact hospice before making any other calls. Appointments & Plans Log When to Call Hospice At The End 8
Crescent Moon Harbor Clinical Care Section Helpful Documents Location Hospice Team Phone List Medications Routine Medication Log Durable Medical Equipment (DME) Nurse Visits Daily Care Log Daily Activities Log Appointments & Plans Log Comfort Response Plan When to Call Hospice At The End 9
Crescent Moon Harbor Helpful Document Locations - DNR - The Do Not Resuscitate form should be placed on the refrigerator or wherever hospice has asked you to put it. If you’ve put it somewhere else, where is it: ____________________________________________________________________________________ Document Locations Medicare Care & Information - Veteran Paperwork - Additional Insurance - Funeral Home -
Crescent Moon Harbor Hospice Team Night #: ____________________________ Day #: _____________________________ Facility Name: _______________________________________________________________ Diagnosis: ___________________________________________________________________ ___________________________________________________________________ Chaplain: _____________________________________ Social Worker: _________________________________ Phone #: _____________________ Counselor: _____________________________________ Phone #: _____________________ Phone #: _____________________ Nurse: _____________________________________ Phone #: ________________________ Scheduled Visit Days: _________/_________/_________ Nurse: _____________________________________ Phone #: ________________________ Scheduled Visit Days: _________/_________/_________ Aide: _______________________________________ Phone #: ________________________ Aide Specialities: Bath/Mani-Pedi/Hair Cut/Massage ____________/____________/____________ Aide: ________________________________________ Phone #: ________________________ Aide Specialities: Bath/Mani-Pedi/Hair Cut/Massage ____________/____________/____________ Hospice Team
Crescent Moon Harbor Phone List Facility: Nurse: ______________________ Nurse: ______________________ Nurse: ______________________ Night # Day # Aide: ______________________ Aide: ______________________ Aide: ______________________ Pastor: _____________________ Church: ____________________ ___________: _________________ ___________: _________________ ___________: _________________ ___________: _________________ Lyft/Uber: __________________ Lyft/Uber: __________________ Doctor: _____________________ Doctor: _____________________ ___________________ Grocery: ____________________ Grocery: ____________________ Pharmacy: __________________ Pharmacy: __________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ Night #: ________________ : ________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ Day #: _________________ :_________________ Phone List
Crescent Moon Harbor Medications Diagnosis: Hospice Pharmacy: _______________________________ Personal Pharmacy: _______________________________ Phone #: ________________ Phone #: ________________ Medication: _______________________________(*R) For: _________________________________ Dosage Min./Max: ________/_________ Times/Day: ______/_____ am/pm Notes: _______________________________________________________________________________ Medication: _______________________________(*R) For: _________________________________ Dosage Min./Max: ________/_________ Times/Day: ______/_____ am/pm Notes: ________________________________________________________________________________ Medication: _______________________________(*R) For: _________________________________ Dosage Min./Max: ________/_________ Times/Day: ______/_____ am/pm Notes: _______________________________________________________________________________ Medication: _______________________________(*R) For: _________________________________ Dosage Min./Max: ________/_________ Times/Day: ______/_____ am/pm Notes: _______________________________________________________________________________ Medication: _______________________________(*R) For: _________________________________ Dosage Min./Max: ________/_________ Times/Day: ______/_____ am/pm Notes: ______________________________________________________________________________ Medication: _______________________________(*R) For: _________________________________ Dosage Min./Max: ________/_________ Times/Day: ______/_____ am/pm Notes: _______________________________________________________________________________ Medications *R - Needs to be refrigerated
Crescent Moon Harbor Routine Medication Log Dosage: 2x day 3x day 4x day Every 12 hours Every 8 hours Every 6 hours Example: 8am/8pm 6am/2pm/10pm 6am/12pm/6pm/12am Date Time Medication Dose Refill Medication Log
Crescent Moon Harbor Durable Medical Equipment (DME) Item Hospital Bed Bed Table Bed Alarm Wheelchair Walker Bath/Shower Chair Commode Nebulizer Oxygen Machine Oxygen Tank Portable Oxygen Patient Lift Ventilator _________________________ _________________________ _________________________ _________________________ _________________________ _________________________ Delivered ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ Returned ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ ______/______/______ Phone #: ______________________________ Supplier/City: ____________________________/__________________________________ Durable Medical Equipment
Crescent Moon Harbor Nurse/Aide Visit Date: Nurse: Aide: Doctor: Day: Nurse: Aide: Other: ______/______/______ __________________ Vitals: Temp: Pulse: Resp: BP: O2: Aide: Bath: Manicure: Massage: Changes to Current Meds _____________________ _____________________ _____________________ _____________deg. _____________bpm _____________ ___________/___________ _____________% Hair Cut: Pedicure: Glucose: O2 Flow: Pain Level: Mood: New Meds Added ___________________ ___________________ ___________________ ___________________ ___________________ ___________________ Questions/Concerns: ___ __ Nurse/Aide Visit
Crescent Moon Harbor Daily Care Log Date: ______/______/______ Day: __________________ _______________________ Vitals/Time: BP: O2: Pulse: Temp: Glucose: Meals: % Eaten Breakfast: _____ Dinner: _____ ___________ _____/_____ _________% ________ bpm ________ deg. _________ ___________ _____/_____ _________% ________ bpm ________ deg. _________ Indications: Pain Level: ０ １ ２ ３ ４ ５ 6 7 8 9 10 Meds Given (As Needed or Requested): Medication:____________________ Relief: ____________________ Mood: Behavior: _______________________ ✫ ✫ ✫ ✫ ✫ Cognitive: Lunch: _____ Snack: _____ Water: ______ oz. Concerns: ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ ___________ _____/_____ _________% ________bpm ________ deg. _________ Daily Care Log
Crescent Moon Harbor Daily Activities Date: Day:______/______/______ __________________ Meals: Breakfast: Dinner: I Helped With: Bath: Mobility: Grooming: ________________ ________________ ________________ _____________________________ _____________________________ Toilet: Nebulizer: Mani/Pedi: ________________ _________________ _________________ Lunch: _____________________________ Snacks: _____________________________ We Did Today: Watched TV: _________________ Had Visiters: ______________ Games: ______________ Talked: Took A Ride: _________________ Phones: _________________ _________________ While They Napped I: ______________________________________________________________________________________ Visitors: ______________________________________________________________________________________ ______________________________________________________________________________________ Reflection: ______________________________________________________________________________________ ______________________________________________________________________________________ Daily Activities
Crescent Moon Harbor Appointments & Plans Log Date Time Appt./Visit Notes Appointments & Plans Log
Crescent Moon Harbor Comfort Response Plan Step 1 - Pause Take one slow breath. Your calm presence helps more than you realize. Step 2 - Assess Check: During the Night: When symptoms change quickly: Step 3 - Use Ordered Comfort Medications May include: Pain medications Anxiety medications Oxygen Breathing treatments Breathing Pain or signs of discomfort Responsiveness Bleeding or injury Fever or sudden changes Turn on thelight Sit by the patient Speak softly Check breathing and comfort Gather medications nearby ● ● ● ● ● ● ● ● ● ● ● ● ● ● Comfort Response Plan
Crescent Moon Harbor Step 4 - Call Hospice Have Ready: Step 5 - Follow Guidance The hospice nurse may: #______________________ ● ● ● ● ● ● ● ● Your Person’s Name Symptoms you are seeing Medications already given Your callback number Adjust medications Guide you by the phone Visit you at home Arrange for additional support Comfort Response Plan
Crescent Moon Harbor When to Call Hospice Medication Concerns Call the hospice nurse or facility if you notice a sudden change or if something simply feels “not right.” ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Medications are not relieving symptoms You accidentally gave the wrong medication or dose The family member can no longer swallow medications A medication appears to worsen symptoms Trouble breathing or gasping Severe or uncontrolled pain Chest Pain Sudden confusion, panic or agitation Hallucinations or distressing behaviors New inability to wake the patient Repeated vomiting Bleeding that will not stop Seizure activity Falls or injuries No urine for 12+ hours Fever or signs of infection Swelling that appears suddenly Your person suddenly refuses all medications Skin becomes rapidly cold, blue or mottled You feel overwhelmed, frightened or unsure what to do When To Call Hospice
Crescent Moon Harbor At The End Step 1 - Pause You do not need to rush Step 2 - Call Hospice The nurse will: Common Signs Step 3 - Do NOT Call 911 Unless specifically instructed by hospice or facility policy. Step 4 - Create A Quiet Space You may wish to: When you believe your person has passed: ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● No breathing No heartbeat No response to touch or voice Eyes fixed or partially open Relaxed jaw Pale, cool or mottled skin Loss of bladder or bowel control Sit quietly Pray Play soft music Call/invite loved ones if hospice agrees Hold their handGuide next steps Pronounce death if appropriate Contact the funeral home or others designated by your hospice team At The End
Crescent Moon Harbor ● Simply rest beside them There is no right way to spend these last moments. Quiet presence is enough. Funeral Home: ____________________________________ Phone #: ____________________________________ At The End
Crescent Moon Harbor Taking Care of You The pages in this section of the book can be helpful by providing a place to record your feelings, fears, stories and photos. They are here to show that taking care of you is also important during hospice. To use these pages or not is up. Use what helps, ignore what doesn’t. Overwhelm Reset - Who can you talk to when it’s all just too much? There will be days when the overwhelm is staggering. You are not alone. Grief Waves - Here is a place to hold your grief when there’s nobody you want to share it with right now. Evening Reflection - How did your day go? You’ve made it through another day. This is where you can record it all. Morning Check-In - This page may help to start your day by checking in with yourself. Did you sleep well, are you ready to start or do you need to just sit a few minutes more. Moments of Light - Some days are heavy. Some days are heartbreaking. And sometimes, in the middle of it all, something makes you laugh. A funny memory. A silly mistake. An unexpected joke. A moment of pure humanity. If you smile, laugh, or enjoy yourself, you are not forgetting your loved one. You are living alongside them. Joy and grief can exist together.Record the moments of light you find along the way. When it Feels Heavy - Some days will drain your strength and resolve. If you’re a journaler or if you just want to write a word or two this page gives you that space. You can also try one or two of the Recovery/Recharge options. 1
Crescent Moon Harbor The Echoes Between the Waves - paper. Thoughts, feelings when you just need to put it on Memory & Meaning - Stories and photos are important during this time. On these pages you can record family stories and photos. 2
Crescent Moon Harbor Morning Check-In My Energy Level Today How Am I Feeling Today Headache Tense Upset Stomach Fatigue Poor Sleep Forgetfulness How Am I Arriving Today Calm Overwhelmed Angry Lonely Exhausted Hopeful Numb Grateful Afraid Date: _____/_____/_____ How Can I Prepare for the Day Ahead Day: ______________ Time: _______________ 2 3 4 5 6 7 8 9 101 You are Carrying a Great Deal Morning Check In
Crescent Moon Harbor Evening Reflection Today I Ate something nourishing Stepped outside Rested Laughed Asked for help Took a deep breath Stretched Drank water Evening Release One Good Moment Date: _____/_____/_____ Day: ______________ Time: _______________ What brought me comfort today? What can I set down for tonight? Evening Reflection
Crescent Moon Harbor When It Feels Heavy I wish someone understood You did the best you could with what you had today Recovery/Recharge Drink water Go outside Ask for help Eat something nourishing Take a nap Today Was Hard Because When It Feels Heavy
Respite care exists so you can rest without guilt. Ask your hospice team. Crescent Moon Harbor Overwhelm Reset This moment will pass You do not have to carry the whole ocean today Just this wave Reset Drink water Sit down Breathe slowly Ask for help Listen to a short, guided relaxation meditation Call ** Hospice: ________________ ** Friend: _________________ ** Pastor: _________________ Overwhelm Reset
Crescent Moon Harbor Moments of Light Some days are heavy. Some days are heartbreaking. And sometimes, in the middle of it all, something makes you laugh. A funny memory. A silly mistake. An unexpected joke. A moment of pure humanity. If you smile, laugh, or enjoy yourself, you are not forgetting your loved one. You are living alongside them. Joy and grief can exist together. Record the moments of light you find along the way. What brought a moment of peace or joy today? What is a story about your loved one that always makes people laugh? Moments of Light
Crescent Moon Harbor Grief Waves What Am I Already Grieving? What Do I Wish I Could Say? What Memory Surfaced Today? “Some days grief is quiet. Some days it crashes like the sea. Both are part of love.” Grief Waves
Crescent Moon Harbor Memory & Meaning Memories become the quiet places where love still lives. A Story I’ll Never Forget Something They Always Said A Moment That Mattered Favorite Song/Food/Place Memory & Meaning
Crescent Moon Harbor Memory & Meaning Photographs hold the moments our hearts never want to lose A Favorite Moment Ordinary Day, Sacred Memory A Glimpse of Joy This Made Me Smile Memory & Meaning
Crescent Moon Harbor The Echoes Between the Waves For the thoughts too heavy, tender, or unfinished to place anywhere else. Final Echoes
You don't have to do this alone. Guidance, Support, Comfort. For today and the days ahead. The Hospice Caregiver Companion is here to walk beside you with practical tools, emotional support, and gentle encouragement for every step of the journey. Inside you’ll find checklists, reflections, self-care reminders and space to hold your own thoughts and feelings. Because caring for someone you love is a journey—and you deserve care, too. Crescent Moon Harbor J. Wallace