Caregiver Training Guide

Any question, day or night, call us 800.707.8922. Be confident that we’re here for you.

NORTHERN OHIO’S HOSPICE OF CHOICE hospicewr.org | /hospicewr

Welcome WELCOME

THANK YOU FOR CHOOSING HOSPICE OF THE WESTERN RESERVE as your caregiving partner. Each of our staff members and volunteers are committed to providing compassionate, exceptional care. We are honored that you and your loved one have placed your trust in us and promise to focus on your priorities, values and goals of care. Your care team includes your loved one (the seriously ill person), you and other family caregivers and your hospice care team members. Our shared goals are directed by the patient and loved ones.

Hospice care is dedicated to personal choice. Your care team members are committed to ensuring that your healthcare choices are respected. They will provide physical assistance and medical care while supporting your emotional and spiritual well-being.

This caregiver training guide offers information that you may need to supplement the services that we provide. It is not meant to be a substitute for our care or services. However, it delivers quick reference to needed, practical information. We have included website links to training videos created specifically for the home caregiver. These may be particularly helpful. Our websitehospicewr.org also has numerous other resources that were created to help make home caregiving easier and more enriching.

Most important, we are available 24/7/365 to answer your questions, alleviate your concerns and ease your burdens. Do not hesitate to call anytime, day or night.

It is a privilege to be invited into your life and home and to play a role in your journey.

Sincerely,

William E. Finn President and CEO, Hospice of the Western Reserve

hospicewr.org/caregiver-training 1 Contents

 Introduction...... 4 Hospice Care Team Members...... 5 FAQs about Hospice Care ...... 5 On-Call Service...... 7 Hospice Care in Assisted Living Communities & Nursing Centers...... 7 Peaceful & Proud Veterans Care...... 8 Services at Hospice Inpatient Care Units...... 8 Extended Care/Continuous Care...... 9 Western Reserve Navigator Palliative Care Services...... 10 Patient Travel Information...... 10  Caring for Your Loved One...... 11  Symptom Management...... 12 Pain ...... 12 Shortness of Breath...... 14 Fatigue...... 14 Restlessness...... 15 Helpful Relaxation Techniques...... 15  Understanding Role of Medications...... 16 Medication Disposal Policy...... 17  Oxygen in Comfort Care...... 21 Oxygen Concentrator...... 21 Important Oxygen Safety Reminders...... 22  The Role of Nutrition...... 23 Changes in Taste and Smell...... 23 Thickening Liquids...... 25 Mouth Care...... 25  Catheter and Seizures...... 26 Caring for a Catheter...... 26 Seizures...... 26  Safety and Prevention...... 27 Preventing Infection...... 27 Prevention of Bleeding...... 28 Preventing the Transport of Bed Bugs...... 29 Home Safety...... 29

2 Caregiver Training Guide TABLE CONTENTS OF

 Providing Physical Assistance to Your Loved One...... 32 Ambulating with Your Loved One...... 32 Assistance Using a Bedpan...... 32 Assistance Out of a Bed to a Chair...... 33 Caring for the Bedbound Patient...... 34 Assistance Using A Commode...... 34 Giving a Bed Bath...... 35 Positioning Your Loved One...... 35 Providing Mouth Care...... 36 Pulling Up a Loved One in Bed...... 36 Changing Bed Sheets...... 37 Assistive Equipment Use...... 37  Cardiopulmonary Care...... 38 Chronic Obstructive Pulmonary Disease (COPD)...... 38 Heart Failure...... 38 Symptoms and Interventions...... 38  Dementia Care...... 40 Caring for Yourself...... 40 Disease Progression...... 40 Dementia Symptoms...... 41 Interventions in Dementia Care...... 43  Caregiver Needs...... 46 Final Days...... 47 Important Things to Attend to When Someone Dies...... 49  Grief and Loss...... 50  Personal Planning...... 52 Advance Care Planning...... 52 The Living Will...... 52 Healthcare Power of Attorney...... 52 Do Not Resuscitate (DNR) Comfort Care Protocol...... 52 (Financial) Power of Attorney...... 52 Organ and Tissue Donation...... 52 Memorial Planning...... 53 Giving Back...... 55 Personal Planning Worksheets ...... 56  Reference...... 60

hospicewr.org/caregiver-training 3 Introduction

HOSPICE CARE PROVIDES COMFORT for the patient and support for you—the caregiver. We work to manage pain and other symptoms of illness. Staff and trained volunteers provide emotional support and can help the whole family explore spiritual questions that often arise when someone is seriously ill. You and your loved one are always in control of the care plan.

How do you help someone who is dying? Confidence in Your Caregiving Hospice workers are often asked that question. During this stressful time, your care team strives to help you feel more confident in providing care and The answer can’t be found in techniques or support to your loved one. We will provide you textbooks. Medications and treatments are with medication education, medical information, important, but the real work of hospice is being telephone guidance and ongoing discussions as the physically and emotionally present. Sharing the disease progresses. final stage of life’s journey with someone is who is dying is the most important thing you can do for We continually assess both our patient, and you, them. Simply be there. the caregiver. We want to hear what you feel, see and need throughout this time. Your care team This caregiver training guide was created by a will check in frequently asking, “How can we help number of our staff members working as a team. you feel more confident as a caregiver? What can we help Allow it to provide you with an immediate you feel more comfortable doing for your loved one?” source of information and to answer many of the questions you might have as you and your loved Whatever your questions or concerns, let us know. ones go through this journey. We are here for you too.

4 Caregiver Training Guide Hospice Care Team Members Nursing Assistants often have the most frequent Specially qualified and trained team members interactions with patients; they can be a great provide hospice services. The individual receiving source of helpful information. Our nursing care and his or her caregivers are vital members assistants are experienced in hospice and palliative of the care team. Together the team creates a plan care. Each of them hold the specialty certification, INTRODUCTION that maintains individual dignity and ensures all STNA, meaning they have additional training and physical, emotional, and spiritual needs are taken have passed a State of Ohio administered exam. care of. They offer important personal care and assistance bathing and dressing. They are also present for Your Hospice Care Team Members emotional support. A Primary Care Physician who is responsible for continued medical management of your loved ones’ Spiritual Care Coordinators explore ways to find care. The Hospice Physician acts as a resource for joy, meaning and purpose in life, even at the end of hospice medical care, and reviews the plan of care life. For those who have a religious faith, this may on a regular basis. include working closely with your spiritual advisor and faith community. Everyone can benefit from a A Hospice Nurse visits on a regular basis to listening ear, guidance and willingness to explore perform physical assessments, provides education Universal questions, forgiveness and hope. on medications, physical care needs and updates the doctor. Your nurse is valuable source of knowledge. Art and Music Therapists provide opportunities for life review and the creation of legacies through Your Social Worker helps you and your loved ones art and music experiences. They work with patients explore care options, understand legal and financial and caregivers to relieve symptoms and express issues and find emotional support. Social workers feelings. are available for individual and family counseling. Our social workers are dedicated to helping the Pharmacists strive to relieve pain and manage patient and family with the many areas of life other symptoms with minimal side effects and impacted by an illness. maximum benefit.

Frequently Asked Questions about Hospice Care

Q: What is hospice care? Q: How long can a patient receive A: Hospice is compassionate, comfort-oriented care hospice care? for the seriously ill with an emphasis on pain A: Indefinitely, if the patient’s condition remains management, symptom control and spiritual and appropriate for hospice care at each certification emotional support for the patient and family. A period. A physician certifies the disease has patient qualifies for hospice care when they have advanced to the point that the patient has months, a prognosis of months, rather than years, to live. rather than years, to live if the illness runs its expected course. After six months, an individual Q: Where can hospice care be provided? can be recertified. Patients sometimes experience A: Anywhere a person calls “home” such as: improved health and do not need continuing ŠŠA private home; group home; nursing or hospice support. If their condition deteriorates assistant living facility; one of our hospice later, they can be re-admitted. inpatient units (refer to page 8); a hospital continued on page 6

hospicewr.org/caregiver-training 5 Hospice Care Team ▸ CONTINUED FROM PAGE 5 Volunteers are valuable members of your team and a great source of support. Volunteer staff A Dietitian provides suggestions on nutrition and receive extensive education and are dedicated to symptom management. maintaining the privacy and dignity of the person receiving care. Overnight and Weekend Team Members assure access to care 24-hours-a-day, 7-days-a-week. Your Volunteers can help in many ways: loved one’s comfort and your comfort-level as a ŠŠProvide a friendly visit or respite for a caregiver are our priority. caregiver ŠŠOffer spiritual care support A Bereavement Coordinator, trained in ŠŠPreserve life experiences through audio or INTRODUCTION supporting those who are grieving, offers video recording supportive services to family members and ŠŠBring a pet to visit significant others during the 13 months following a ŠŠAssist with occasional housekeeping and death. meal preparation ŠŠProvide simple legal assistance Volunteer Service Managers help identify areas ŠŠMake periodic phone calls through check-in in your life where a volunteer may offer assistance. programs to ensure patient needs are met They discuss the role of a volunteer with the ŠŠProvide support to Veterans through our patient and caregiver before asking a volunteer to Peaceful & Proud Program (see page 8) join the team. ŠŠDeliver comfort massage or reiki ŠŠProvide support and presence in the time surrounding death ŠŠHelp fill a special request to bring fulfillment and comfort through the Moments to Remember program (if you have a special request or wish, please tell a team member).

Frequently Asked Questions about Hospice Care

Q: Who pays for hospice care? Q: Does the patient keep his/her own doctor? A: Hospice of the Western Reserve is a Medicare/ A: Yes, hospice patients may continue to be served Medicaid certified hospice program, offering a by their own physicians. Hospice team members comprehensive Hospice Benefit. This benefit work with each physician, serving as a liaison includes hospice care team services, medications between physician, patient and family. We also and treatments related to the terminal illness, have a practice of nine certified hospice physicians medical supplies and durable medical equipment. on staff. If you wish to change physicians or do Many medical insurance companies have similar not have a primary care physician, and wish for plans that cover hospice services. one of our hospice physicians oversee your care, notify your team.

Q: What if the patient moves during hospice care? A: A transfer to another Medicare-certified hospice can be arranged by your hospice team.

6 Caregiver Training Guide On-Call Service Hospice Care in Assisted Often, questions, concerns, and problems occur Living Communities & during the night or on weekends. We encourage caregivers to use our on-call service when these Nursing Centers needs arise. We want you to feel confident calling Assisted living communities and nursing centers INTRODUCTION for support. A nurse is always available on-call. have become more common and more popular. And many younger and healthier people are The on-call number is 440.942.6699 or entering senior communities with the intention of 800.665.2619. Please refer to the Communication aging in place, even as their medical needs change. Card on the back of this booklet for names and The medical community refers to all these living contact numbers and keep in an easily located area environments as “alternative home” settings. They in the home. include: assisted living, nursing facilities, long- term care centers, group homes or other residential If you call for support after 4:30 in the evening, care settings. our answering service will promptly answer. The operator will request the patient’s name and the People living in long-term care settings, including reason for your call. Then the operator will ask you nursing homes, assisted living facilities or group to hang up and to not use your telephone while homes, may receive hospice care. We have awaiting the call back. The on-call nurse will be dedicated Hospice of the Western Reserve teams notified and he or she will return your call within that partner with alternative home staff to care 15 to 20 minutes. If your call is not returned in 15 for the individuals who live in them and require to 20 minutes, please call again. hospice care. We provide the same support and care for a resident as they would for a person living If there is a change in the patient’s condition in a private home including additional expertise or a medical emergency, call Hospice of the in pain and symptom management, grief support, Western Reserve first. We request that you do on-going consultation and access to our on-call not call 911. hospice staff. By working together, we enhance the residential facility’s excellent services.

Q: What if the patient no longer wants or Q: How does Hospice of the Western Reserve needs hospice services? offer support to caregivers and other A: We will always honor the wishes of the patient loved ones? or his/her designated representative for care. If A: We provide support from clinical staff, personal services are no longer needed or desired, the care for the patient, professional counseling, patient must sign a discharge form. There are art and music therapy, spiritual care, pharmacy times when a patient’s condition stabilizes, and services and more – all of which help caregivers the hospice care team will discuss discharge. return to the role of spouse, child, parent or The patient may then join our Western Reserve friend. We offer caregiver respite, if family Navigator program (see page 10) and a team members need a break from the stress of member will call and visit periodically to check caregiving. Our social workers can help navigate on the patient’s condition. If you notice changes the emotional complexities of serious illness. in the patient’s physical health, do not hesitate to Our volunteer program is available to create a call us. Hospice services will always be available “Moment to Remember” for patients and families when needed. by helping them fulfill special wishes and meet day-to-day needs. Our bereavement staff is available to help loved ones manage their grief.

hospicewr.org/caregiver-training 7 INTRODUCTION communities or in VA in or communities facilities. living assisted and hospital centers, care at our apatient’s in provided be home, can Hospice Veteran Honored our pin. with service We military their veterans for recognize dependents. and for veterans benefits and resources counseling, to-Veteran volunteer pairing, spiritual care and Veteran- art, and music using expressive therapies storytelling, wills, ethical Veterans with assisted are regret, and substance anxiety abuse. or remorse as such veterans, for issues emotional other and disorder post-traumatic in stress training receive staff of Western unpaid the and paid Reserve Proud Westernthe developed the has Reserve To meetthespecialneedsof veterans Personalized Care for Veterans Peaceful &Proud: ADDITIONAL SERVICES Hospice of Western the Reserve. with collaboration in works that afacility locate help worker will hospice the social facility, care enter along-term to home, at but expects living is the Hospice patient If Benefit. Medicare the under not covered is for board room and charge The covered. be will illness serious the of aresult as needed medications and equipment, supplies, then insurance, private through for ahospice benefit eligible is patient the If ▸ Communities &Nursing Centers Hospice Care in Assisted Living 8

CONTINUED FROM PAGE 7 C aregiver TrainingGuide program. Through Peaceful & Proud & Peaceful , Hospice of of , Hospice Peaceful & & Peaceful , Hospice , Hospice attending physician, will determine if a change in in achange if determine will physician, attending your with Your collaboration in team, hospice care Hospice Inpatient Care Units Levels of Care Provided atour our refer to please services, practitioner nurse and physician and charges board room and billing, and insurance you, with bring to items personal medications, directives, advanced transportation, policies, such smoking as: information For additional lovedand ones. patients of our needs meet to the of services array an one Each has units. hospice care home-like three Hospice offers of Western the Reserve Inpatient Care Units Services atOurHospice board charges. board and room no are level there GIP care, of the in care. inpatient general for co-pay a charge insurances commercial Some insurances. commercial and Medicaid Medicare, to billed is care inpatient General determined. been has care of the of plan effectiveness the once communicated be will of discharge day Anticipated of admission. time the at beginning for discharge plans discuss Team will members setting. care alternate an to transitioning in assist will hospice the option, team not an is this If managed. or optimally controlled are symptoms and once residence pain same the to return patients Often, residence. patient’s current the at managed be cannot that or symptoms pain (GIP) level inpatient addresses of care general The General Inpatient Pain andSymptom Management/ your loved one’s necessary. level is of care Patient and FamilyPatient and Admission Guide While a patient remains remains apatient While

. INTRODUCTION

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hospicewr.org/caregiver-training document the care given during the visit and other staffkeep members updated on patient’s the response will to the plan care. of We reposition bed bound patients and bathe/change incontinent patients frequently for comfort and to prevent skin breakdown. appropriate level of careappropriate of is level maintained to achieve at any may, optimum Team symptom relief. Your point, recommend transfer a our of inpatient to one units if the symptoms persist. This is recommended only if is longer it feasible no optimum to achieve system management in the patients’ residence. symptomsOnce are controlled, the patient will return to routine care. hospice Extended Care is meant not to be a substitute the patient’s for caregiver care in the hospice or team. the home is It geared toward managing active, difficult symptoms. while us of you expect What can Care? Extended receiving In addition to regular visits primary your by team, may different encounter you staff members while are receivingyou this service, including trained volunteers. While our staff in home, your willelectronically Home Away From Home From Away Home When an illness brings a short life expectancy there(typically may to be a need move days), 1 to 14 from hospital or our the of home Hospice to one can inCare help the transition Units.We and provide a peacefulfrom and safe away home home in the final days. Eligibility criteria to apply this program. Pleaseask to speak with team a hospice this feel member if you situation. may to your apply Care Care/Continuous Extended Continuous care care of is that a level addresses pain, nausea, shortness breath, of other hard-to-or manage symptomsthat may require intense more skilled care than can be managed at the patient’s current residence without additional skilled nursing intervention. This care of is level meant to be short term. Ongoing reassessment will ensure that the

setting. and board Room charges to this apply level of care. whose symptomswhose are controlled optimally or managed extra a few need who but days at the inpatient unit to smoothly transition to another care This care of may level patients also for be approved Residential Care assists patients are who unable to care themselves, for limited have capacity no or family caregiving resources a limited or prognosis. availability. availability. We at Hospice of the Western Reserve the Western of are at Hospice We committed to providing Residential Care at our CareHospice Units a limited on basis based bed on Residential Care Residential Care beyond five days. Arrangementsmust be made days. five beyond Care fees board Room and in advance. and approved apply beginning six. on day insurance companies also pay for Respite Care. Care. for Respite insurance companies also pay to extend Respite need a patient may Occasionally, Medicare/Medicaid patient may be admitted for be admitted patient may Medicare/Medicaid with of care at the Respite level days up to five Some commercial charges. and board no room her caregiver needs a short interval of rest or relief or relief needs a short of rest interval her caregiver intend must The caregiver duties. caregiving from A admission. after the respite caregiving to resume Respite Care Respite if his or be admitted for Respite Care A patient may based on the patient’s attendingbased the patient’s on physician recommendation or the goals of care. General Inpatient care can also be provided in certain hospitals. The may option be offered facilitate or another transition to home a smooth charges apply. and board Room setting. care symptoms are optimally managed, they must be must they optimally managed, are symptoms care. of level Home Care to the Routine changed to in order Short-term be approved may stays If a patient needs to remain at the Hospice Care Care Hospice at the remain to needs If a patient determines the hospice team Unit after that their INTRODUCTION caring nurse 24 hours aday, hours 24 nurse caring 7days aweek Youvolunteers. have will to access a toll-free Practitioners, social workers and trained Navigator TeamOur of Nurse comprised is Healthcare Power of Attorney. Durable and wills living as such topics about you yourconversations and loved between ones difficult with help can staff and volunteers during health challenges and our trained Emotional is soPassport. support important and Medicaid Medicare, as such programs for We also can help families’ complete paperwork much as possible. you to help as avoid and symptoms hospital the and pain yourwith manage physician to better We Navigator’s goals. prime work collaboratively hospitalizationvisits and unnecessary is one of room emergency costly and stressful Minimizing of life.quality improve that resources additional finding in throughout their illness and assisting the family theirmanage symptoms, them supporting We example. patients for helping on focus disease, well as heart as diabetes illness, serious haveMany Navigator one patients than more further diagnostictests continuing to pursueaggressive treatment and may chooseto receive palliative care advanced illness.Unlike hospice care, patients who have beendiagnosed with aseriousor Navigator maybeappropriate forindividuals and symptom management Palliative Care Palliative Care Services Western Reserve Navigator ADDITIONAL SERVICES 10

C aregiver TrainingGuide isthemedicalterm for . . WesternReserve while while pain pain You you welcome feel decisions always make to are needed. as often as and freely questions Ask managed. are symptoms for patient’s the when current the care planning in assist and team your primary from for visits available involved yourStay loved in one’s be Please care. benefits of Extended Care? What can youdoto maximizethe 8–12 an shift. hour during breaks 10-minute up two, to and break meal a30-minute allowed are members your home. in not Staff smoke while will and andbeverages food their own bring will staff Our times. all at respectful and courteous be will your home, in and guests as conduct themselves will times, all at alert and awake remain will staff Our ▸ Extended Care/Continuous Care transfer of hospice care. of hospice care. transfer the with assist we will care, inpatient requires and travel during changes patient’s the If status completed. be to forms appropriate provide and arrangements alternate make will Your team. team your care care inform please longer, for up 14 to staying area If days. consecutive service of outside our travel supports policy Our care. hospice for to your access arrangements make and ahospice we so contact may traveling, to prior days five least at business possible, soon as as hospice team your notify Please on care. patient collaborate to willing are States United the hospices across Many area. service of outside our travel to needs care receiving when person the occasions be may There Patient TravelInformation replacement. a request to service On-Call or our team primary your in call home,your member please staff a particular with you not satisfied are time any at If care team. hospice your primary with decisions these discuss etc. Please medications, refusing bed, in turning not such of patient, as the interest best the in are CONTINUED FROM PAGE 9

Caring for Your Loved One

YOUR HOSPICE CARE TEAM will do their utmost to preserve dignity and comfort. What is dignity? Dignity means many things to many different people. It is about self-respect, life history, family, friends, work, hobbies, feelings, hopes, dreams and life lessons—all the things that are most important to our patients; the things that make your loved one unique and special.

Comfort is easier to define. When making a visit, your care team will focus on the patient, noting pain and other symptoms (such as breathing trouble, nausea, weakness, constipation).

It is important to remember that you, the caregiver, are also part of the circle of care. Please keep your hospice care team informed of your own emotions and feelings. Your team is here for you.

Any question, day or night, call us 800.707.8922. Be confident that we’re here for you. hospicewr.org/caregiver-training

hospicewr.org/caregiver-training 11 Pain Managing pain is most important to us. Pain Try to rate the pain. “0” (zero) is no pain. “10” is is whatever the person receiving care says it is, the worst pain. (Refer to page 13) existing whenever he/she says it does. Please be confident that we will believe you and Tell your team what makes the pain better or your loved one if you report pain. We will educate worse, and how well pain medications are working. you about pain and pain relief measures. Your team We encourage you to write down any and all will respond quickly to reports of pain. questions you have. Share them with your care team during visits, or call anytime. ▸ Call Your Hospice Care Team if: ŠŠThere is an increase in pain, new pain or Helpful Hints on Describing Pain SYMPTOM MANAGEMENT SYMPTOM discomfort ŠŠAsk the team about what to expect regarding ŠŠThere is no relief from pain pain and pain management ŠŠThere are side effects, which may include ŠŠWork with your team to develop a pain constipation, drowsiness and/or nausea management plan ŠŠYou have questions regarding pain ŠŠReport pain when it first begins management ŠŠReport any problems that you think the pain ŠŠThere is a rapid decline or change in your medications may be causing, as there may be loved one other options ŠŠQuestions arise regarding dosage and/or ŠŠTell your team if you are having any medication changes. difficulty getting medications or have concerns about them Effective Pain Management ŠŠReport feelings of anxiety. Pain can be physical, emotional or spiritual. Pain can be caused by many factors such as swelling, If your loved one can’t communicate, look for the nerve damage, or progression of a disease. Your following signs of discomfort and speak for your team will continually evaluate pain symptoms for loved one to your care team. your loved one. ŠŠMoaning ŠŠFrowning Help your loved one try to describe the pain they ŠŠRestlessness are feeling. Use words like: ŠŠTenseness ŠŠSharp ŠŠTears. ŠŠConstant ŠŠShooting Helpful Hints for Managing Pain ŠŠSqueezing ŠŠTry various relaxation techniques ŠŠDull ŠŠDistractions can help -- watch a movie, visit ŠŠAching with friends, play a game, listen to music ŠŠBurning. ŠŠSoak in a tub, if possible ŠŠHot or cold packs applied to painful areas ŠŠTry guided imagery ŠŠApply light massage or touch.

12 Caregiver Training Guide WONG Baker FACES® Pain Scale SYMPTOM MANAGEMENT

0-10 Numeric Pain Scale

0 1 2 3 4 5 6 7 8 9 10 No Pain Moderate Worse possible

Notes

hospicewr.org/caregiver-training 13 Shortness of Breath Fatigue Oxygen therapy is not a treatment for all types of Fatigue is one of the most commonly experienced shortness of breath. Some suggestions for managing symptoms in hospice and palliative care patients. shortness of breath are below. Consult your hospice Fatigue is a feeling of extreme exhaustion usually care team for other suggestions. resulting from emotional distress, physical distress or an illness. Signs of Fatigue include: What Can Be Done if the ŠŠIncreased sleeping Patient is Short of Breath ŠŠLack of appetite ŠŠTry to stay calm ŠŠNot participating in usual activities because ŠŠOpen a window or use fan directed at of being “just too tired”. patient’s face to create movement of air SYMPTOM MANAGEMENT SYMPTOM ŠŠProp head up in bed/chair Helpful Hints: ŠŠApply a cool cloth to face ŠŠPlan activities for the “most awake” times of ŠŠMassage the day ŠŠYoga breath-slow breathing in through nose, ŠŠDecrease the number of activities planned for out through mouth one day ŠŠConserve patient’s energy (sit whenever ŠŠChange position and location. Avoid staying possible) in bed if able. ŠŠTake medication as instructed ŠŠRoutinely incorporate activities to restore ŠŠPlay soft music or keep room quiet, energy such as music, meditation, go outdoors. depending on patient’s preference ŠŠConsider equipment to help with moving ŠŠIf oxygen has been ordered be sure that it is such as a walker, cane or wheelchair. Relying on. on equipment will help to conserve energy for other activities of choice. ▸ Call Your Hospice Care Team ŠŠAllow caregivers to assist with dressing, ŠŠDistress is caused by shortness of breath fixing meals, eating, shopping, cleaning, ŠŠFever or moist productive cough is present laundry, etc. to help conserve energy for ŠŠBluish discoloration of face, nose, fingers, or other activities of choice. toes is visible. ŠŠRest as needed. Listen to what the body needs. ŠŠAttempt to get uninterrupted hours of sleep and avoid interruptions of sleep routines. ŠŠIncrease high protein foods ŠŠEat small, more frequent meals.

▸ Call Your Hospice Care Team if: ŠŠYou notice suggestions above aren’t working ŠŠPatient is unable to have a restful sleep ŠŠYou are unable to administer medications as prescribed ŠŠThe patient appears unsafe (concerns about falling from extreme fatigue) ŠŠIf you would like increased emotional or spiritual support to help with emotional fatigue ŠŠYou or other caregivers are having a hard time coping.

14 Caregiver Training Guide Restlessness A person may be described as restless if they are SYMPTOM MANAGEMENT unable to rest, concentrate or focus. As restlessness becomes worse it can turn into agitation and the person is unable to relax given our best efforts. Nearly half of Hospice patients become restless during the last 48 hours of life.

Signs of Restlessness: ŠŠMuscle twitching ŠŠSleeplessness ŠŠPulling on sheets or clothing ŠŠTrying to get out of bed without a known reason ŠŠInability to get comfortable ŠŠRepositioning or moving without a known reason ŠŠFidgeting.

Helpful Hints: Helpful Relaxation ŠŠOffer frequent reassurance to the person who is agitated Techniques ŠŠPlay soothing music ŠŠKeep the environment calm (consider Everyone has his or her own way to relax. By decreasing visitors) following these simple steps for relaxation, the ability to manage stress and improve breathing ŠŠCalmly read a favorite story, poem or letter will increase. ŠŠGive a gentle massage ŠŠDistract the person with something familiar ŠŠFind a place free of distraction and interruptions such as photos or a task (folding laundry, art, ŠŠDim the lights and turn off the television or writing) ŠŠTurn off the phone ringer ŠŠKeep the person safe if they are wandering ŠŠTurn on soothing music (optional) and check in frequently ŠŠLie in bed or sit in a comfortable chair ŠŠUnderstand that restlessness may be a sign ŠŠLie or sit quietly, begin to focus on that death is nearing. breathing.

▸ Call Your Hospice Care Team if: Naturally, breathing will slow down as you begin  to focus on exhaling. As breathing slows, let the ŠŠYou notice behaviors or signs listed above weight of your body sink into the chair or bed. ŠŠYou are unable to administer medications as Imagine a favorite place. Imagine moving around prescribed in this place and notice all the colors, sounds and ŠŠThe patient appears unsafe smells of the surroundings. ŠŠTo report what appears to make the Enjoy this place and the feeling of relaxation it restlessness worse (loud noises) brings. Movement is free and breathing is easy in ŠŠTo report what appears to make the this place. Continue to relax and enjoy the music restlessness better for a time. It is okay to fall asleep. When ready to ŠŠIf you wish to consider spiritual support for return from this place, slowly move fingers and the patient toes and slowly return to an upright position. ŠŠIf the caregiver is having a hard time coping.

hospicewr.org/caregiver-training 15 Understanding the Role of Medications Medications come in different forms including: pills, liquids, inhalants, patches, suppositories and ointments. Medications may be changed into different forms depending on the patient’s needs, such as difficulty swallowing.Let your hospice team know if you have less than a two-day supply of any current medication.

Medication  DO How to Make Medication Time ;;Read the medication label first. Easier for Patient and Caregiver ;;Administer all medicine exactly as it is ŠŠTo make pill swallowing easier, moisten written on the prescription or as ordered by mouth with water or add pills to applesauce the physician, for example “with food.” or pudding. Some pills may be cut in half. MEDICATIONS ;;Administer routine medication on a regular ŠŠIf giving a medication rectally, it is best schedule; timing is very important. to administer after a bowel movement if ;;Use break-through or in-between medicine possible. Using a glove, lubricate one finger as instructed by the hospice nurse and and insert the medication at least 2/3 of the physician to prevent pain from escalating. finger’s length. ;;Tell your hospice team before stopping or ŠŠWhen using liquid medicine, slightly tilt changing medications. head upright and slowly pour the medicine ;;Keep a written schedule and record when, down the side of the mouth. and how often, medication is taken. (See ŠŠWhen administering medication under the Appendix) tongue or between the cheek and gum, ;;Avoid alcoholic beverages while taking moisten the area with two to five drops of medicine. water and then place the pills in that area as ;;Tell your hospice nurse about any over- directed by your hospice care nurse. the-counter drugs, vitamins, mineral supplements or herbal remedies that your Medication Schedule and Record loved one is currently taking. Supplements It is helpful to use a medication schedule and can sometimes interfere with medication. record to document all medications given or taken. Inform your care team members where to find the Keep all medicine out of reach of children medication schedule so they can make sure your and pets. loved one is receiving the correct medication(s) and doses at the right times. Keep the DNR card with Medication  DO NOT the medication schedule. (See Appendix) ::Share medications with anyone else ::Crush pills unless directed or instructed by Controlled Substances your hospice nurse Controlled substances are specific medications ::Take more than the amount that is ordered. determined by legal authorities to have a greater need for careful and precise accountability. Examples of controlled substances include many pain medications like morphine and some anxiety medications like Ativan® (lorazepam). The use of controlled substances at Hospice of the Western Reserve is based on a patient specific pharmaceutical plan of care, involving critical assessment, careful monitoring, and physician authorization. Any suspected diversion or misuse will be investigated.

16 Caregiver Training Guide Medication Disposal Policy Home Care The following changes have been implemented The patient’s family/caregiver will be instructed by the agency in response to the revisions to the on the disposal of medications on admission Ohio Revised Code under (B)(9) Section 3712.062 and ongoing. A nurse will witness disposal of referring to medication disposal and reporting to medications, particularly at the time of death. local law enforcement. Documentation of the education, performance of disposal, or the refusal of medications will be MEDICATIONS To assure the safe and effective entered into the electronic medical record. disposal of medications: PROCEDURE: Once a medication is dispensed by the If abuse or drug diversion is suspected and the pharmacy, the medication belongs to the patient family refuses to dispose of medications or have for whom it was prescribed; therefore no transfer of Hospice of the Western Reserve nurse facilitate medications to other people is legally permissible. disposal, local authorities will be notified.

Disposal of medications involves rendering them Specific Disposal Methods at Home: unusable. This is especially critical for controlled ŠŠUtilize any community or pharmaceutical substances to prevent diversion. program allowing for proper disposal of medications as available Medications which should be ŠŠUtilize Ohio State Drug Repository disposed of include the following: Program if able and appropriate ŠŠDiscontinued medications for patients still ŠŠConsider eliminating any personal health actively receiving care when the chance of information from the pharmaceutical restarting that medication is remote and/or labeling (peel label off, crossing off with a the chance of medication error is high permanent black marker). ŠŠExpired medications ŠŠAny questionable medications such as Remove or change original labeling issues, pharmaceutical integrity formulation as follows: issues, or other specific factors ƒƒOral dosage forms: Add liquid to begin ŠŠAll medications after a person’s death. dissolution process ƒƒSuppositories: Cut up Nursing Home or Facility ƒƒOintments/Cream: Eject remainder The disposal of medications will be handled ƒƒTransdermal: Cut up (use gloves if available according to the facility’s policies with the review or use care not to touch transferable and collaboration with Hospice of the Western medication area) Reserve as necessary. ƒƒInjectables: Withdraw remainder ƒƒSyringes: Eject remainder ƒƒLiquid: Pour out.

hospicewr.org/caregiver-training 17 MEDICATIONS Notes ▸ Medication DisposalPolicy 18

CONTINUED FROM PAGE 17 C Š Š Š Š Š aregiver TrainingGuide Š Š Š Š Š a toilet unless specifically instructed to do so.to do instructed specifically unless a toilet down medications flush to Do NOT attempt identification discourage able, further to if opaque bag, an inside preferably receptacle, atrash in Place un-divertible and undesirable mixture thebag/can/container to flour the renderto litter, or kitty grounds, coffee used Add begin to process dissolution/leaching for allow to involved is already) medication liquid (ifno ofwater quantity asufficient Add wasted on size/volume be to depending container plastic or empty can, empty an bag, sealable a in medications feasible)(if all or place container original the in occur can Disposal Hospice of the Western Reserve will take take Hospice will of Western the Reserve of care. plan patient’sthe transdisciplinary were opioids in included that containing substances controlled remaining of any type and quantity the patient’s the which in home located is territory the over jurisdiction enforcement law with local the to addendum), report guide (seenotice caregiver of opioids/medications, written despite dispose to refuses family the if Code, Revised Ohio the (B)(9)Under 3712.062 of section division of above. as accomplished be will Destruction protocols). per research permitted as medication investigational and authorization Pharmacy of Board per Ohio (controlled substances pharmacist the and substances) (non-controlled nurses the completed be by will destruction Medication Hospice Inpatient Units visit hospicewr.org/fda-safe-disposal. FDA, please the from information For additional notified. be will authorities local disposal, facilitate Hospice nurse of Western the Reserve or have of medications dispose to refuses family the and suspected is diversion or drug abuse If medications. other and substances and/or of controlled dispose supervise and facilitate to of death time the at responsibility MEDICATIONS

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hospicewr.org/caregiver-training try dry toast, dry crackers, bananas, rice and clear liquids. If there is lightheadedness, inability fever, to urinate or continued diarrhea.0 Try a dietTry clear of liquids broth, (water, ginger and rectal keep ale), area clean and dry give the not patientDo anti-diarrhea medication unless instructed the hospice by nurse If diarrhea has hours, 8 to 12 for stopped Š Š Š Š Š Š Š Š Call your Hospice Care Team Care your Hospice Call  ▸ Diarrhea Diarrhea Diarrhea is characterized watery loose or by stools. may beIt accompanied pain by and stomach cramping. Diarrhea that does stop can not cause dehydration, weakness, electrolyte imbalances, and increased stomach pain. Hints Helpful

If there are black/tarry coffee or ground looking stools as these may indicate the blood. of presence If there is no bowel movement in two days. movement If there is bowel no If the patient experiences abdominal pain or cramping, vomiting. nausea and/or Š Š Š Š Š Š Call your Hospice Care Team Care your Hospice Call  Notes ▸ laxatives softener a stool routinely day each and/or will prevent constipation. The hospice nurseThe hospice routinely starts a laxative when a patient is placed pain on medication. Taking Certain medication, especially pain medication, will cause is able, one constipation. If loved your drinking water and more fruit juices may help. Constipation Constipation (having no bowel stools) movement hard or small, change. pain Remember, is tiring and with relief of pain, thepatient will sleep. starting increasing or a pain medicine. Often after two to three days following of a pain treatment plan, the feeling will pass. The body adjusts to the Sleepiness Sleepiness Patients to tend experience fatigue first when to medications and combinations medications. of one nurse The doctor hospice or can loved your help throughwork any effects side to thefind way to best manage symptoms. Medication Side Effects Effects Side Medication Any medicine can effects, side some not have but allexperience reactpeople People in them. differentways MEDICATIONS Notes and VomitingNausea Helpful Hints to Combat issues. help may digestive These eating. after down lying and excessive activity odors, strong foods, fatty meals, heavy products, However, your loved one avoid should dairy first. hospice the to nurse speaking without medicine pain the not should taking stop patient help. to The medicine is there begins; or vomiting nausea if your hospice nurse Call illness. their in or achange anxiety infection, an medicine, pain anew starting -- of forreasons anumber vomiting Your and loved nausea one experience may and VomitingNausea 20

Š Š Š Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Š Š Š cereal) after 24 hours following liquid diet. diet. liquid following 24hours after cereal) dry toast, (crackers, dry foods bland Add vomiting after Gatorade) Jell-O, ale, (ginger for 24hours liquids clear drinking Continue hydration Take or popsicles flavored ice chips, ice for vomiting after mouth thoroughly Rinse tea or peppermint ginger-ale sips of small Offer rested and still Keep patient ordered as medication anti-nausea Administer techniques ormusic slow breathing quiet, meditation, with anxiety Reduce ▸   DONOT Call yourHospice Care Team Š Š Š Š Š : : : Š Š Š Š Š : : : loved one. loved your you about concerned If medicating are swallow to unable is patient the If continues constipation If brown or red dark bright is vomit If liquids clear drink to starting after returns vomiting If Eat any spicy or fatty foods. foods. or fatty spicy any Eat odors strong around Be vomiting 1–2 after hours or drink Eat OXYGEN IN COMFORT CARE

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hospicewr.org/caregiver-training

Use anUse extension cord Place unit in space enclosed or a closet Add fresh distilled old of top water on water; will it contaminate. Store in an area open Always sides the keep unit of a minimum of three from inches away walls, curtains and furniture Make sure oxygen tubing is kinked not or bent onlyUse distilled water in the humidifier bottle in bottle waterKeep level between water- fill lines at all times Empty humidifier bottle level water when reaches bottom line Connect oxygen tubing to humidifier lid Change water in bottle every 24 hours to bacterialprevent growth to makeCheck sure water is building not up in tubing. intoPlug outlets that other appliances have plugged into them Plug directlyPlug into a wall outlet : : : ; ; ; ; ; ; ; ; ; : ; : : : ; ; ; ; ; ; ; ; ; : ; DO DO NOT  Oxygen Concentrator Concentrator Oxygen Anoxygen concentrator is an electrical device that takes the oxygen from the air room and concentrates so that are it receiving you higher oxygen provides It nearly levels. pure oxygen through a nose tube (cannula) mask. or may use It a humidifier bottle attachedconcentrator to a to filter room the air. An alarm will when sound the concentrator is initially turned and on if is it not operating properly. 

Grab the tank its by valve Drop the tank allow or tanks to hit each other Store tanks in the trunk a vehicle. of side and away from andside away sources heat valveKeep protection cap in place when tank is being not used Store in a well ventilated area. Keep tankKeep secured in carrying cart in upright position Store tanks currently not being used the on Keep a fireKeep extinguisher nearby. should use oil-based of lotions,Avoid lip balms, petroleum jelly aerosol sprays. or allow not Do the oxygen user others or in the oxygen where is toroom smoke turned on. electric razors, grinders, gas and stoves appliances. The patient should remain feet at least 10 from any sparks source of (radios, or TVs, other electrical equipment.) Keep allKeep ignition sources away (sparks) from oxygen. Sources ignition of include: lighters,matches, candles, hairdryers, : : : ; ; ; ; Š Š Š Š Š : : : ; ; ; ; Š Š Š Š Š DO DO NOT   When Using an Oxygen Tank Tank an Oxygen When Using following rules are followed: followed: rules are following Oxygen use can be safe if the safe if be can use Oxygen patient responsible or caregiver must sign an Oxygen Agreement Letter using notify when any oxygen. To others that oxygen is Smoking”in must post “No use,you signs that are visible to all visitors. There are two devices care your provided by team that deliver oxygen: oxygen tanks and oxygen concentrators. Oxygen in Comfort Care Comfort in Oxygen The use oxygen of is determined the doctor by nurse and hospice and must be used as instructed. The Important Oxygen Safety Reminders

 DO NOT SMOKE WHILE OXYGEN Nasal Cannula (nose tube) IS IN USE. and Tubing Care The nasal cannula has two prongs that go gently Smoking refers to both tobacco products and into the nose. Make sure prongs are curved smokeless vapor producing products or devices such downwards and bring tubing around each ear to as but not limited to, e-cigarettes and hookahs. help hold the prongs securely. Smoking devices have heating elements that can serve as an ignition source. Replace nasal cannula or mask if it becomes

XYGEN IN COMFORT CARE discolored or cracked. Irritation may occur when O Smoking while using oxygen can cause facial using nasal cannula, but can usually be relieved by burns, property damage and death. People who putting water-based lubricants, such as K-Y Jelly smoke pose a threat to themselves, loved ones, (do not Vaseline; it is flammable) around nasal caregivers, neighbors and pets. passages. If tubing causes ear soreness, pad tubing with cotton or gauze around ear area. Many items that would not normally burn in normal air will ignite when increased oxygen Helpful Hints levels are present. When oxygen is used, it creates ŠŠClear tubing attached to the oxygen tank/ an oxygen-enriched environment. This lowers the concentrator allows oxygen to travel from temperature at which everyday household items equipment to patient through a cannula, or such as bedding, furniture, clothing and even facial mask human hair ignite and burn. ŠŠTubing is routinely replaced every three months, along with humidifier bottle, At Our Hospice Inpatient Care Units cannula and/or mask; it all can be replaced All Hospice Inpatient Care Units are located on more frequently, if needed smoke-free campuses. Because of the use of wall ŠŠReplace tubing if it becomes blocked or oxygen, visitor smoking is prohibited. Designated kinked. smoking locations are for patients only. See Residence Guides for smoking policy information. ▸ Call the Oxygen Provider phone number is printed on oxygen equipment ŠŠWhen oxygen level meter reads “1” ŠŠWhen the equipment is not working properly.

What to do if Electricity Goes Out ŠŠStay calm ŠŠSince oxygen concentrators use electricity, you have been provided with a minimum of two tanks in case of power outage ŠŠTake the oxygen tubing that is attached to the concentrator and attach to the oxygen tank, adjust and set oxygen flow rate ŠŠCall your hospice care team to report any problems or concerns.

22 Caregiver Training Guide The Role of Nutrition It is normal for those who are seriously ill to have changes in appetite and in the way they eat and drink. Frequent oral care, small sips of fluid, ointment to the lips and light massage with lotion are all ways to comfort and support the patient at this stage. Try offering food frequently during the day; three to six light meals or smaller portions are usually better tolerated than traditional meal sizes. Offer fluids between meals, instead of with meals to prevent feelings of fullness. Arrange meal times when your loved one is most rested and active. Do not force your loved one to eat. NUTRITION

Helpful Hints to Improve Nutrition If your loved one complains of foods such as soups, ŠŠYour loved one should avoid eating when tomato sauces, casseroles, salad dressings, and gravy nauseated or in pain tasting salty, try adding sugar. If foods taste too ŠŠInvite others to share meal times-socializing sweet, add a pinch of salt and serve cold. If foods makes everything taste better taste too bland, use additional herbs and seasonings ŠŠSet a pretty table­-add candles or flowers, and experiment with strong flavored foods. Have play music, garnish food to make it more your loved one try alternate bites of different pleasing to the eye tasting foods within a meal. For example, a bite of ŠŠFreshen up hands and face with a warm or something sweet like pineapple and then a bite of cool, moist cloth before eating bland cottage cheese. A bite of grilled cheese; then ŠŠHave meal options or food choices available a spoon of tomato soup. ŠŠVary food preparation techniques: grill, fry, broil, or roast Helpful Hints ŠŠHave good tasting snacks readily available ŠŠIf your loved one complains of a metallic ŠŠIf nothing tastes good, hydrate with ice chips or bitter taste, or of dry mouth, give them or Popsicles lemon drops, mints or gum for relief ŠŠUse herbs, spices and other seasonings to ŠŠTry serving foods cold or at room add flavor. temperature, especially meat. This can decrease strong tastes and smells, making Changes in Taste and Smell them easier to tolerate. Foods will often taste and smell differently as your ŠŠAvoid foods usually associated with a bitter loved one’s illness progresses. This may be due to taste such as red meat, tomatoes, coffee, tea, the illness itself, the medicine or treatments. Even and chocolate favorite foods may have little or no taste or can ŠŠAdd sugar to make food more appealing taste “off”. This can reduce appetite. ŠŠSeason foods with tart flavors such as lemon, lime, other citrus, vinegar, or sweet and sour To combat a poor appetite, have your loved one sauce begin each meal or snack with a clean mouth. ŠŠDon’t use metallic containers or metal Brush teeth and tongue with a soft toothbrush and utensils because it can leave a residual flavor. use a mouth rinse. Frequently rinse mouth between Plastic, ceramic and glass is neutral. meals with cool water, mint-flavored water, tea, or ŠŠTry frozen grapes, oranges, cantaloupe, ginger ale. watermelon, berries, and bananas for nutrition and hydration.

hospicewr.org/caregiver-training 23 The Role of Nutrition Helpful Hints for Good Nutrition ▸ CONTINUED FROM PAGE 23 ŠŠServe your loved one’s meals in a pleasant and relaxing environment; minimize Difficulty Swallowing distractions such as TV When a person has difficulty swallowing, there is ŠŠDo not leave your loved one alone while eating increased risk of aspiration (taking food or fluids ŠŠAllow sufficient time for eating, but avoid long into the lungs) and choking. To decrease this risk, mealtimes so your loved one does not tire change the texture of foods and/or thickness of ŠŠIf your loved one is bed or chair-bound, fluids. Foods that are of mixed consistency (liquid position the patient straight up (hips at a 90 along with solid) may be difficult to manage in the degree angle) with the head slightly forward mouth and therefore increase the risk of aspiration and the chin down to prevent food from NUTRITION and choking. Examples of mixed consistency foods going down the airway are vegetable soup and cold cereal and milk. Also ŠŠServe only one bite at a time and allow time avoid dry, hard, sticky and fibrous foods and any to chew food thoroughly foods with seeds or skins. These types of foods ŠŠIf one side of the mouth is stronger, he or she are hard to chew and move around in the mouth, should chew on that side making them more difficult to swallow. ŠŠMake sure your loved one concentrates on swallowing; patients should not breathe or Give your loved one foods that are easy to chew, try to talk until food is completely swallowed moist enough to slide down the throat, and evenly ŠŠCoughing can prevent food from going textured. Soft food is usually well tolerated but if down the airway; the patient should cough as not, it should be chopped/ground or pureed. needed ŠŠAvoid using liquids to clear the mouth of  Foods to Avoid food; that may cause choking ::Foods that crumble and break into pieces ŠŠIf pocketing of food (food collecting in (crackers, chips, pretzels, taco shells) side of mouth) is a problem, apply external ::Foods that consist of small pieces (rice, corn, pressure to the affected side of the mouth peas, popcorn, granola, raisins, beans, nuts) while your loved one is chewing ::Food that sticks to the mouth and throat ŠŠUse pureed baby foods for convenience and (peanut butter, cream cheese) add seasonings to enhance flavor ::Food that has fibrous parts or seeds (celery, ŠŠUse garnishes to make the pureed food look fruits with peels, tough meat) more attractive ::Food that is hard to chew (tough meat, whole ŠŠAfter eating, make sure your loved one raw vegetables, hard fresh fruit, bagels). remains upright for 20 to 30 minutes ŠŠUse mouth rinse after eating.  Foods that are generally well tolerated ;;Starches: bread, pancakes, waffles, hot cereals, well-cooked pasta, mashed potatoes, muffins, stuffing, lightly toasted bread ;;Fruits/vegetables: soft, peeled or pureed fruits and well-cooked vegetables ;;Dairy: milk shakes, pudding, custards, ice cream, yogurt, cottage cheese ;;Protein: diced, well-cooked meats served with gravies, ground meats and scrambled eggs ;;Miscellaneous: soft French fries, cheese pizza, cream soups.

24 Caregiver Training Guide Thickening Liquids Mouth Care To decrease the chance of choking, liquids can be Tips for providing mouth care: thickened by adding a commercial food/liquid thickeners to all liquids, including juices, soups, ŠŠClean the mouth with toothpaste and soft coffee, and milk) to bring them to the correct toothbrush or toothettes consistency. Commercial food/liquid thickeners ŠŠUse diluted mouthwash for mouth freshness can be found on-line or in many drugstores. ŠŠUse hard candy, ice chips, popsicles, frequent sips of water to treat dry mouth NUTRITION ŠŠPrepare milkshakes in a blender with milk, ŠŠSpray the mouth with a mister filled with ice cream or instant breakfast mix cool water to treat dry mouth (a mixture of 1 ŠŠMix and thicken soups in a blender with tsp. of baking soda in 8 oz of water into the potatoes and /or potato flakes or baby cereal mouth can also help treat dry mouth. flakes until smooth ŠŠCombine pureed fruit and fruit juice to the consistency of syrup ŠŠThicken liquids with pureed fruits, yogurt, dried baby cereal, yogurt, or pudding ŠŠPlace a ripe banana into a blender and add to a milkshake, nutritional supplement or juice ŠŠAdd pudding or custard to milk or yogurt.

Notes

hospicewr.org/caregiver-training 25 Caring for a Catheter Seizures A catheter is a tube inserted into the bladder to Seizures look like twitches or tremors in the face help drain urine. It has a small balloon that is and/or extremities. Seizures generally last less than blown-up to keep the tube from falling back out. A a few minutes. Once a seizure has started, it cannot catheter may be needed due to increased weakness, be stopped. loss of bladder control, etc. If a catheter becomes needed, the hospice nurse will place it and show  DO the caregiver how to care for it. ;;Stay calm ;;Protect patient from injury – pad bed rails, Helpful Hints remove sharp or hard objects near patient ŠŠWash your hands before and after handling ;;Turn head to the side if mouth secretions CATHETER & SEIZURES & CATHETER the catheter are present ŠŠCheck the tubing periodically to see if urine ;;Allow for rest after seizure has fully ended. is draining ŠŠBe sure that the tubing is not kinked or bent  DO NOT ŠŠChange the drainage bag weekly, as the ::Force anything between the patient’s teeth nurse demonstrated ::Put fingers in the mouth ŠŠEmpty the drainage bag 1–2 times per day; ::Hold down twitching extremities unless it empty leg bags every 3-4 hours is essential for personal safety. ŠŠKeep the drainage bag below the level of the bladder at all times ▸ Call your Hospice Care Team ŠŠDo not pull or tug on the catheter or tubing ŠŠIf the seizure is a new occurrence, is unusual, ŠŠCleanse the tubing with soap and water daily lasts longer than a few minutes, or results in and when the tubing gets soiled injury. ŠŠBe sure to begin where the tubing enters the body and work away ŠŠIf the patient is pulling on the catheter, put on a pair of adult briefs to hold it more securely in place, keeping it from moving ŠŠWhen turning the patient from side-to-side, move the drainage bag from side-to-side ŠŠIrrigate the catheter if the nurse has instructed you to do so.

▸ Call your Hospice Care Team ŠŠIf the catheter is not draining ŠŠIf the urine has an odor or change in color ŠŠIf the patient spikes a fever.

26 Caregiver Training Guide Preventing Infection Influenza (Flu) Hand washing is the single most important step in This is a highly contagious viral disease that infects the prevention of any infection. Wash your hands the nose, throat and lungs. It is spread from person to SAFETY &PREVENTION with liquid soap and warm water for a full count person by droplets in the air when the infected person of 15–20 seconds. Be sure to wash entire hand coughs, sneezes or talks. Symptoms develop one to to above the wrist, between fingers and under four days after exposure. Symptoms include fever, fingernails. Rinse well with warm water. Dry headache, dry cough, sore throat, extreme fatigue, hands with a paper towel. runny or stuffy nose and muscle aches. The peak flu season is from late December through March. Alcohol-based hand sanitizers may be used when hands are not visibly soiled. Sanitizers may be kept How to Prevent the Flu at the bedside for use when a sink isn’t close to the It is important that caregivers and family members patient care area. Apply a small amount to palm of get a flu shot in October or November. Some hand and rub hands together, covering all surfaces patients have weak immune systems and are unable of hands and fingers until dry. to respond to the flu vaccine and so they are very susceptible to it. It takes two–three weeks for the Wash your hands before and after: body to build antibodies to the vaccine and protect ŠŠGiving care to the patient you from the flu. The flu shot lasts approximately ŠŠUsing gloves 12 months and must be repeated every year. ŠŠUsing the bathroom ŠŠEating or smoking Shingles ŠŠBefore preparing meals Shingles is caused by the same virus that causes ŠŠHaving contact with any body fluids chicken pox. After recovering from chicken pox, ŠŠPlaying with pets, doing yard work and/or the virus lives on in the body and remains inactive housework until a patient has a serious illness or trauma that ŠŠReturning home from being out affects the immune system. The virus, when ŠŠHaving contact with someone who is ill reactivated, causes shingles. ŠŠCoughing or sneezing. Symptoms of shingles include a tingling feeling on one side of the body which starts itching and then becomes a rash. Fluid filled blisters then develop from the rash. These fluid filled blisters are contagious to caregivers or family members who have not had chicken pox. When these blisters dry and crust over (in about three to five weeks) they are no longer contagious. Visitors and anyone caring for the patient who has not had chicken pox should wait until the patient is no longer contagious before visiting. Check with your doctor immediately.

hospicewr.org/caregiver-training 27 Preventing Infection Prevention of Bleeding ▸ CONTINUED FROM PAGE 27 Patients may be more likely to bleed because of the effects of their illness or medications. Talk with a Blood-borne Pathogens hospice nurse if any unusual bleeding occurs. There are diseases that cause a risk to caregivers such as Hepatitis B and C and AIDS. Hepatitis B Helpful Hints and C are viruses that cause serious liver disease ŠŠAvoid using sharp objects (knives/scissors/razors) and are spread through exposure to blood and ŠŠBe careful not to bump into your loved one other body fluids. AIDS affects the immune while you are caring for them system. It is spread through blood and semen. ŠŠUse an electric shaver not a manual razor There is no vaccine for AIDS. Use precautions and ŠŠDrink warm fluids and/or eat fruit to help SAFETY & PREVENTION & SAFETY use latex condoms to prevent the spread through reduce the likelihood of constipation, which sexual contact. can cause bleeding. (See Constipation pg. 19) ŠŠUse soft toothbrush, sponge, or “toothette” Helpful Hints to prevent gums from bleeding; avoid flossing ŠŠUse disposable gloves when in contact with ŠŠBlow nose gently. the patient’s body fluids (blood, urine, stool, wound drainage) ▸ Call your Hospice Care Team ŠŠRemove gloves and dispose of in trash ŠŠBlood in urine, stool, sputum or vomit immediately after use. Place trash soiled with ŠŠBloody nose (several episodes or one that is blood or body fluids in a leak-proof plastic not easy to control) bag and place in trash container ŠŠMultiple bruises ŠŠClean up body fluid spills as soon as possible ŠŠMany small, reddish-purple spots under skin ŠŠUse a 10% bleach and water solution to ŠŠIf bleeding occurs, apply moderate pressure clean up body fluid spills (1 ounce bleach to the area if possible and call your care team. and 10 ounces water).This solution is good for 24-hours only. A fresh solution needs to be made daily. Use household disinfectants appropriate to surface being cleaned ŠŠAir out room when possible ŠŠPlace needles, syringes, razors and other sharp objects in a plastic red container – keep sharps and the red container out of the reach of children ŠŠDo not share personal care items ŠŠInstruct visitors to wash hands before and after visiting with patient. Request “no visiting” if visitor has a cold or does not feel well ŠŠIf the primary caregiver or other family member is ill, the best choice would be to relieve the caregiver of duties until well again. If this isn’t possible, use good handwashing, gloves and a disposable surgical mask to protect the patient. ŠŠRequest advice from your hospice team about vaccines and other precautions.

28 Caregiver Training Guide Preventing the Transport Home Safety

of Bed Bugs SAFETY &PREVENTION Electrical Bed bugs have increasingly become a nuisance Place electrical cords from medical equipment throughout the United States. Please report to your (bed, oxygen concentrator, etc.) and extension hospice team members if bed bugs are suspected cords out of walkways to prevent tripping or or if you know they are present where the patient falling. Check extension cords often to make sure lives. This will help them to use safety procedures they are in good repair. Extension cords should to prevent their transport outside of the home or not be overloaded. It is a safer choice to use power facility. strips (surge protectors) or outlet adapters. Keep unused electrical equipment unplugged and place When the care team visits a home or facility where safety covers in unused electrical outlets. Store and bed bugs are suspected or known they are required use electrical appliances away from water. to wear protective shoe covers and coveralls. In some instances, they may be required to carry a Walkways change of clothing in sealed bags to change into Remove as many rugs, runners and mats as possible prior to leaving. The team will only bring supplies from areas used by the patient. Secure all loose or equipment they need for the visit. These will rugs with double sided tape or rubber matting to need to be placed on hard surfaces such as a table, prevent falling. Replace or repair torn or frayed chairs without fabric upholstery or similar pieces of rugs. Keep carpets tacked down. Keep stairs and furniture. Any equipment or supplies that the team halls clear and well lit, with well-secured rails on takes with them from the home or facility will be both sides. Patients should wear shoes with tread sealed in a plastic bag before they leave. and avoid using the stairs wearing only socks, loose slippers, or smooth-sole shoes. When a patient must be moved from a home or facility with known or suspected bed bugs to a Outdoor entry ways should be well lit and clear of hospice in-patient unit, hospital, nursing home, debris, ice, leaves and snow. Provide secure outside assisted living or other location, the hospice care step and porch railings. The house address should team will bathe the patient and place them in a be clearly visible from the street during the day and clean gown provided by the team. night to guide your hospice care team and other visitors. In this situation, patients and family members are not permitted to bring any personal items such as Pet Control purses, bags, clothing, luggage, hygiene kits, etc. For the safety of your Hospice Care Team and If medications accompany the patient, they will your family pets, we ask that you contain any pets be placed in a sealed plastic bag. Family members prior to team members entering the home. Care accompanying the patient are asked to inspect their Team members have the right to request that pets clothing prior to accompanying the patient. The be contained and to refuse to enter the home if hospice care team will notify the transportation they are not. In the event that a team member is company, funeral home and any other agency or bitten by a family pet, Hospice of the Western service that will have personnel or equipment Reserve is obligated to report the bite to the health coming into the home that there is a possible or commissioner of the district in which the bite confirmed infestation. occurred. Please see codes.ohio.gov/oac/3701-3- 28v1 for more information.

hospicewr.org/caregiver-training 29 Bathroom Emergency Response Install grab bars and non-skid mats in showers, Hospice of the Western Reserve conducts tubs and toilet areas to help with transferring the and participates in periodic emergency patient. Always check the water temperature for the preparedness drills in order to test the agency’s patient before a bath or shower. and community’s emergency response plans. Team members will communicate with you in Telephone the unlikely event that these could affect you. Be certain that all cell and cordless phones and are charged and place hospice care team and In the event of an actual emergency, emergency phone numbers in easy-to-find places including natural and manmade disasters, near phones. Keep a phone near the patient’s bed or life-threatening situations or utility failures, SAFETY & PREVENTION & SAFETY chair, within easy reach. If your loved one is alone please contact 911. Please notify Hospice of the for all or part of the day, ask a friend, neighbor or Western Reserve as soon as feasible. Follow other family member to make periodic calls, or the directions of the community emergency consider an emergency monitoring device. response system from the radio or TV.

Fire Safety Team members will be assigned to contact There should be at least one smoke detector for patients and families in affected emergency areas each level of the home. Develop an evacuation to assist with emergency response. Please contact plan that includes evacuating those who need help Hospice of the Western Reserve to assist in the to walk or who are bedbound. Make a secondary event that the patient and/or caregiver must be escape plan in case the primary plan cannot be moved or evacuated from their location, or are carried out. Include family members, neighbors transported to a hospital or emergency shelter. and/or friends to assist in evacuation if necessary. Be certain to communicate your evacuation plans Emergency Medication Distribution to everyone involved. Hospice of the Western Reserve, in cooperation and mutual agreement with health departments Clear all pathways and keep all exits open and throughout Northeast Ohio, is authorized to serve unblocked. If you have a deadbolt, keep the key as a closed point of distribution of medications near the door and let everyone in the household needed to counteract a health threat in the event know where to find it. Do not leave fireplaces and of a manmade or natural disaster. Medications and space heaters unattended while in use. Fireplaces health department educational materials would should have screens or doors which are kept closed. be distributed to patients and their household Heaters should have screens or an automatic members by team members and volunteers. This shutoff devise. Kerosene heaters require good room would eliminate the need to access community ventilation. Never smoke or have open flames in points of medication distribution. your home if oxygen is being used or stored. Keep fire extinguishers within reach at home and replace Evacuation before the expiration date. Have an evacuation and backup plan ready. Determine where the patient may be moved to, such as the home of a neighbor or friend. Communicate the plan to everyone involved. Prepare to shelter in place if travel or evacuation is prohibited due to weather or other conditions. Notify Hospice of the Western Reserve if the patient and/or caregiver need to change locations.

30 Caregiver Training Guide Sheltering in Place Utility Failures There are many online resources that can be In the event of a utility failure, report the problem

used to help plan for emergencies that may affect to the utility company. If the utility failure will SAFETY &PREVENTION communities for a few days or possibly longer. require the patient or caregiver to change locations, County and City Health Departments, Emergency please notify Hospice of the Western Reserve. Management Departments and Homeland Security all offer guidance on how to prepare for these Power Outage situations. Having a seriously ill household member If the patient uses a medical device or equipment makes these preparations even more important. We that requires an electrical source, switch to the encourage you to access these sites and implement back-up energy source, if this does not occur plans that meet your particular household situation. automatically. If the patient uses an oxygen concentrator switch to the back-up tanks (see Some items to consider: Oxygen on page 21). Contact Hospice of the ŠŠFood and water supplies: 3-5 day supply Western Reserve if patient needs to change of water (1 gallon per person per day) and location or to notify oxygen supplier for additional unrefrigerated, ready-to-eat foods oxygen as needed. If a crisis occurs, call 911. ŠŠMedications, patient care supplies and personal care supplies Gas Leak ŠŠLight sources (flashlight, extra batteries) If you know or suspect a natural gas leak leave ŠŠBattery operated radio or TV the area immediately and go to a safe location. ŠŠFirst Aid Kit. Natural gas has a “rotten egg” smell. Do not do anything that could cause a spark or ignite the gas Tornado Safety such as using electrical devices (telephones, light Tornado Watch means that local weather switches, garage door openers, e-cigarettes, etc); conditions exist for a tornado to develop. For using open flames (matches, lighters, cooking, Tornado Warnings, remain calm. Move the patient candles, fireplaces) or starting vehicles. Contact to the lowest level or basement of the home. If the gas company. Inform the local police and fire there is no basement, go to a windowless interior departments. Do not re-enter the building until room or hallway, or move to an inner wall and the gas company has given the approval. Contact cover up with blankets. Close all blinds and drapes Hospice of the Western Reserve if the patient or in the room to aide in reducing flying glass if the caregiver need to change locations. window(s) break. If crisis occurs, call 911. Water Outage/Shortage If a water outage or shortage occurs, use emergency bottled water supply or purchase bottled water. Follow advisories, notices and directions for using or boiling water. Restrict the use of available water for drinking. Contact Hospice of the Western Reserve if the patient or caregiver need to change locations.

hospicewr.org/caregiver-training 31 Providing Physical Assistance to Your Loved One Hospice of the Western Reserve has created 10 short, educational Caregiver Training Videos that demonstrate how to provide essential care during daily activities such as walking, bathing and toileting. These are not meant as a substitute for one-on-one education from your hospice care team but may help you become more confident in your role as caregiver.For the full series of videos please visit hospicewr.org/caregiver-training.

If you do not have access to the Internet, or if you prefer in-person training, your Hospice Care Team would be happy to assist you. PHYSICAL ASSISTANCE PHYSICAL

Ambulating with Your Loved One Assistance Using a Bedpan 1. Always stand on the person’s weaker side 1. When assisting someone to use a bedpan, it is when assisting with ambulation. always recommended to use gloves. 2. Place your hands around their waist to guide 2. First explain to the person what you are the person gently and offer support. planning to do. 3. If the person should fall, guide them slowly 3. Lower the bed into a flat position to the ground and sit with them. Keep your 4. Help the person roll to one side in bed. hands around their waist to guide their 5. Place the bedpan squarely under the buttocks center of gravity to the floor landing on their 6. Roll the person back over on top of the bottom. bedpan 7. Double check to be sure the bedpan is in the right position 8. If able, place the person into a sitting position. Place toilet paper or a warm wash cloth next to the person. 9. Give the person some privacy, but stay close (outside the door) to hear if help is needed. 10. When they are done, lay their head down and carefully roll the person to one side to remove the bedpan 11. Help cleanse the area if assistance is needed and pat dry 12. Dispose of waste in the toilet and clean out the bedpan. 13. Remove gloves and wash hands.

32 Caregiver Training Guide PHYSICAL ASSISTANCE

Assistance Out of a Bed to a Chair

1. Have the person scoot to the side of the bed 9. Grab on to the person’s pants or use the draw that they will be sitting on. sheet to help pull the patient to a standing 2. Raise the head of the bed completely. position 3. Allow the person to rest in the position of 10. The person should not grab you around having their head elevated to avoid light your shoulders as this could injure you. The headedness as their body gets used to sitting person can hold on to your waist. up. 11. The person receiving help can push off the 4. Bring the person to a sitting position on the side of the bed or hold on to the walker, side of the bed. wheelchair or arms of the chair. 5. Allow the person to dangle their legs on 12. Once standing, pivot slowly, hold on to the the side of the bed. Move slowly and allow person’s pants or draw sheet, until the they time for the blood to circulate to avoid light feel the surface of the chair behind their headedness as someone changes position. knees. 6. Place appropriate footwear on the person’s 13. Have the person reach both hands backwards feet to offer stability. to the arms of the chair or continue to hold 7. Face the person and place your right foot the waist of the caregiver. between the person’s feet. 14. Bend your legs to help lower the person as 8. Bend your knees to ensure you are assisting they slowly sit. the person using your legs and not your back. 15. Gently guide the person by their waist to sit.

Assistance from Sitting to Standing 1. Assist the person to the edge of the bed or chair 2. Face the person with feet shoulder width apart 3. Reach under the arms, with his/her arms on your shoulders, with your knees bent and back straight 4. Hug your loved one gently while raising to a standing position; allow them to pull on your shoulders for stability 5. Do NOT let go until you are sure the person is stable while standing.

hospicewr.org/caregiver-training 33 Caring for the Bedbound Patient Assistance Using A Commode PHYSICAL ASSISTANCE PHYSICAL 1. When caring for a bedbound patient it is 1. When moving with a person, it is essential to essential to prevent pressure sores or skin explain the purpose, goal and what you are tears. Turning or repositioning every two going to do with the person prior to starting hours is the most effective prevention. the task. 2. A natural tendency is to raise someone’s 2. Ambulate with a person to the commode feet up, however, it can be harmful to a until the patient feels the surface of the person’s buttocks if their head is raised above commode behind their knees. 30 degrees and their feet are elevated at the 3. Lower their pants and make sure the lid is same time. This position will cause skin open to the commode. breakdown to occur on the buttocks from 4. Have the person reach both hands backwards the skin being pulled in opposite directions. to the arms of the commode, or continue to 3. Another prevention strategy to consider hold the waist of the caregiver. when caring for a bedbound person is to 5. Bend your legs when you help lower the keep the skin clean and dry. person as they slowly sit. Be sure they are 4. If there are areas that promote sweating sitting squarely on the commode. Gently such as on the back, buttocks and under the guide the person by their waist to sit. breasts, clean and pat dry those areas daily. 6. Give them toilet paper and a warm wash A common “hospice intervention” is to cloth to clean themselves, if they are able. apply antiperspirant under the breasts to help 7. Allow privacy if needed. prevent skin breakdown from sweating. 8. After using the commode, offer hand sanitizer and anything else needed to clean up. 9. Help to stand after using the commode by first placing their feet in a comfortable position in front of the commode. On a count of three help to a stand position. Be sure the person gets their bearings prior to taking a step.

LEARN MORE ONLINE For the full series of videos, please visit hospicewr.org/caregiver-training.

34 Caregiver Training Guide PHYSICAL ASSISTANCE

Giving a Bed Bath Positioning Your Loved One 1. Gather the following supplies if giving a bed 1. Turning and repositioning of a bedbound bath: wash basin, soap, lotion, washcloths and person should occur every 2-3 hours to towels, gloves and clean clothes. prevent skin breakdown and to maintain 2. Place warm water in the basin and add soap general comfort. to the wet washcloth. 2. If using a hospital bed, start by raising the 3. Wash, rinse then dry one area at a time side rail on the side of the patient that they using very little soap (to avoid dying of the will be turning toward. skin). Cover each cleaned area with a towel 3. Raise the bed to the top of your hips to or blanket before moving to the next area. avoid bending over the person - bending A common strategy is to start with the over could cause back strain which you want exteremities and wash the trunk last. to always avoid. 4. Consider changing the water half way 4. Remove all pillows. through washing the patient so that it 5. If they are able, have the person bend their remains warm. legs to help them roll to the side. 5. Check for dry skin and be sure to use 6. The person should always roll to their moisturizing soap and lotion if you notice weaker side so that the strong arm is pulling this. their body over. 6. Call the nurse if you notice any red areas that 7. Ask the person to reach and grab the bed rail do not go away after several hours. to their ability while you gently guide the 7. Keep sheets dry and wrinkle free to prevent person on to their side. pressure sores. 8. Consider placing a pillow, blanket or towel 8. Be sure to turn people and reposition every between the knees and ankles to offer two hours to prevent pressure sores. additional comfort and prevent bone resting on bone while lying on their side. Skin Care 9. Place a pillow behind the back for support Keeping the skin moisturized and clean with and to hold the side-lying position frequent position changes (every two hours) is 10. There should not be any weight on the important during illness. Specific things to keep in shoulder or knees. Be sure to keep bony mind abotu proper skin care: prominences are protected. ŠŠIf the skin is very dry use moisturising soaps 11. Raise the head of the bed to about 20 and lotions degrees for comfort. ŠŠAfter bathing, make sure soap is rinsed off completely and the skin is thoroughly dried ŠŠAvoid rubbing reddened areas ŠŠBathing may not be appropriate everyday for all patients

hospicewr.org/caregiver-training 35 Providing Mouth Care Pulling Up a Loved One in Bed PHYSICAL ASSISTANCE PHYSICAL 1. Gather the following supplies for mouth *This is a two-person task. care: soft toothbrush, toothpaste, cup of 1. If using a hospital bed, start by lowering the water, dish to spit into. Additional items side rails. such as K-Y jelly to moisturize lips (Vaseline 2. Raise the bed to the top of your hips to should never be used with oxygen because avoid bending over the person - bending it is flammable); 1 tsp of baking soda in 8 oz over could cause back strain which you want water can help with dry mouth. to always avoid. 2. Have the patient sit up if possible. 3. Lower the head of the bed so that the person 3. Check for redness or white patches. is lying flat. 4. Rise mouth and dentures after meals 4. Stand between the hip and shoulder of the 5. Remove dentures before bed. person and grab and role the draw sheet with 6. Notify the hospice team if you notice white palms facing down. Be sure the draw sheet is patches on the person’s gums, tongue or between the nipple line and mid-thigh of the throat. Also notify the hospice team if the person in bed. person is having difficulty swallowing. 5. Have the person bend their knees and dig their heels to help push with their legs to move up in bed. Remind them to do this on your count to three. 6. Remove the pillow from under their head. 7. Further direct the person to hug themselves and lower their chin to avoid skin tears. 8. Both caregivers, turn their front foot forward toward the head of the bed 9. Bend at the knees. 10. On the count of three, pull the person up in bed. 11. Both people lift at the same time, using leg strength and not your backs, to move the person up in bed. 12. Gently replace the person in bed, straighten the sheets and flatten any wrinkles that could be uncomfortable for the person to lay on.

LEARN MORE ONLINE For the full series of videos, please visit hospicewr.org/caregiver-training.

36 Caregiver Training Guide Changing Bed Sheets Assistive Equipment Use 1. If using a hospital bed, start by raising the Using assistive equipment: walkers,

side rails. canes, wheelchairs, bath benches PHYSICAL ASSISTANCE 2. Raise the bed to the top of your hips to avoid and shower seats, etc. bending over the person - bending over could ŠŠAssistive equipment should not be used alone cause back strain to your back which you want until the patient has been shown how to use to always avoid. it properly. 3. Lower the head of the bed so that the person is ŠŠIf the patient is unsteady, a walker or cane lying flat. should not be used without some assistance 4. Stand between the hip and shoulder of the during walking. person. This is where you will grab the draw ŠŠEquipment can be cleaned using soap and sheet to move the person on to their side. water and towel dried before subsequent use. 5. Ask the person to reach and grab the bed rail ŠŠA pad or pillowcase on the wheelchair seat - if they are able - while you gently guide the will also help keep it clean. person onto their side. ŠŠMake sure the chair or bench is secure and 6. Place the pillow behind the back for support dry in the tub/shower before using the and to hold the side lying position. Position the equipment. person’s arm out of the way to avoid shoulder ŠŠRemoving all throw rugs will reduce falls. discomfort while the person is lying on their side. ▸ Call your Hospice Care Team 7. Begin to change the sheets by rolling the used ŠŠIf the patient has fallen sheets (including the fitted sheet) under the ŠŠIf the equipment is cracked or broken person along the length of the person’s body. ŠŠIf there are any questions about the proper 8. Attach the top and bottom corners of the clean use of the equipment. fitted sheet and flat sheet. Smooth the clean sheet out under the patient. 9. At this time a draw sheet can also be placed under the patient and folded with the clean sheets under the patient. A draw sheet is necessary for someone who is bed bound. 10. To complete making the bed with clean sheets, roll the person to their opposite side, helping them to gently roll over the used sheets and newly placed clean sheets. 11. Once the person is re-positioned on their opposite side with pillows for stability, pull out the used sheets. Place used sheets into the laundry bin. 12. Pull the clean sheets tight and attach the final two corners, making sure any wrinkles are flattened.

What is a draw sheet? Learn more at hospicewr.org/Caregiver-Training

hospicewr.org/caregiver-training 37 CARDIOPULMONARY CARE through pursed lips. lips. pursed through slowly exhale and muscles stomach the tighten Then, not chest rise. The does relax. muscles stomach the nose, feeling the slowly through Inhale on abdomen. the resting hands with position acomfortable sit in second the In technique, mouth. the slowly through exhale and out acandle blowing if puckerthen as lips counts, for nose the two slowly through inhale technique, first the In air. more oxygen-rich in take disease cardiopulmonary end-stage in patients help that techniques breathing two are There Breathing Techniques bed. of out get who for cannot those activities physical for ideas Your suggest can Hospicepainting. team or knitting like enjoy activities physical other walk, to her. unable If him/ when suits itday best a times several walks short able take should are energy. who Patients increase can exercise intensity low in muscle groups of large use the shows that Research exercise. is so helpful, is rest Though energy. help to ways conserve Your table. dinner the suggest Hospice Team will up at house) the or around or sitting your driveway (i.e. down distances short walking such as tasks everyday to perform forpatients difficult be It can fatigue. is of COPD HF and symptom A common Fatigue discomfort. and swelling causing as well, parts otherbody in can collect Fluid tobreathe. difficult it very making lungs the up in mayback fluid chambers, its completely to become weak empty too has ability heart’s pumping the When Heart Failure (HF) airways. the of or by collapse airways, the around of muscles and/or tightening mucus, excess inflammation by hindered been has the lungs through Airflow or emphysema. bronchitis, chronic severe asthma, with associated It often is have developed years. that problems over of of lung many aperiod COPD result the is Chronic Obstructive Pulmonary Disease(COPD) Cardiopulmonary Care 38

C aregiver TrainingGuide

use of an opioid of an helpuse (i.e. reduce can morphine) the show that studies Research of breath. shortness help to relieve used be medicine that team by hospice the suggested be it might Sometimes Medication Breath with Managing Shortnessof be found on page 15. foundbe on page can examples Some general techniques. relaxation in assistance provide can hospiceThe team of COPD HF. and stress mental and physical the cope to with useful be may Relaxation Relaxation ▸ of breath. of shortness feelings the help lessen also may of afan use the At times, medications. of any use the help explain will hospiceThe team of breathlessness. relieve afeeling and exhaustion  Call yourHospice Care Team Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š relieved by current medications. medications. byrelieved current neck, jaw, not or back, arms, chest, in Pain breath to unable night the during Waking day one in or more of pounds two Weight gain Fever color in of secretions Change secretions mucus Increased fatigue Excessive or nebulizer inhaler of an use Increased of breath shortness Increased

CARDIOPULMONARY CARE

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hospicewr.org/caregiver-training is effective a simple service yet Phone Support: A Call to Connect Connect to Call A Support: Phone cardiopulmonary Reserve’s the Western of Hospice support teamphone is comprised volunteers of calls phone makewho weekend to patients with a cardio pulmonary or diagnosis reside who in a private Caregiversresidence. patients of living in nursing facilities, and interested in receiving calls phone weekend should from a volunteer, Calls team the hospice let know. are made once during the and weekend accommodate the patient’s encouragepatients We andschedule. caregivers to use these calls to discuss any difficultiesthey may be experiencing. to ConnectA Call that the keeps patient and caregiver connected with team. the hospice provides It support and monitoring symptoms of and reminds the family that their care hospice team is available.

Arrange Pastoral for presence care/supportive read scripturePray, sacred or texts. therapies, as such art, massage music, Meditate use or guided imagery Identify sources inspiration of and personal growth/satisfaction Keep a journal Talk about accomplishments or regrets Think past about coping skills Utilize support systems friends, of family, church, or synagogue Engage in complementary / integrative What hope? gives you What peace? gives you What provides meaning and purpose in life? your Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Notes Suggestions: Consider the following: the following: Consider may be helpful in discussing fears, regrets, and hopes. you to offer toto offer Patientsyou visit. areencouraged to themeet Spiritual Care Coordinator. she or He Exploring spiritualitycan be helpful emotionally and further enhance relaxation. A Spiritual Care willCoordinator Team from hospice your contact Spirituality and Patients Patients and Spirituality with COPD/HF DEMENTIA CARE Notes Cognitive dementia. of stages late indicate below may behaviors and symptoms the abilities, of loss The of person. the health overall the and of dementia type the including factors on many depend progression its and of dementia course The Disease Progression (see end the nears disease the as of depression feelings experience dementia of someone with care taking who are caregivers many have shown that Studies for YourselfCaring concerns. common other and medication safety, behaviors, typical communication, caregiving, creative in caregivers assist to designed is section following The dementia. managing in you feel you’ve you person the love. with aconnection experienced lost Hospice is of Western the Reserve if difficult particularly be It can challenging. and rewarding both is for dementia someone with Caring Dementia Care 40

Š Š Š Š C Caregiver Needs Caregiver aregiver TrainingGuide Š Š Š Š Behavioral changes. communicate to ability Impaired disorientation and confusion Profound remember to ability the in decline Progressive on page 46). on page Nutritional Functional Complications Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š pneumonia. pneumonia. in resulting and lungs) the food into and fluid (taking or aspiration of choking risk the swallow,Weakened to increasing capacity feed oneself to of ability Loss of appetite loss Progressive bathing). dressing, (i.e. for oneself care to of ability Loss independently out or get of bed walk to of ability Loss incontinence. incontinence. and immobility to related breakdown Skin incontinence bladder and Bowel infections tract urinary pneumonia, such as Frequent infections, DEMENTIA CARE

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hospicewr.org/caregiver-training not talknot to him/her like a child. Look directly approaching one, loved at your him/her fromthe front to get a gentleUse attention touch and provide a physical connection as the patient may sudden movement Avoid startle easily using one his/her loved Greet your name first short,Use simple words and sentences, try or gestures explain to help clearly do and but Speak deliberately, slowly, Š Š Š Š Š Š Š Š Š Š Š Š Non-verbal means of communication become increasingly important as the ability to use words diminishes.and convey Body language, and on-going, contactgentle eye promote touch sensitive communication. Adopting ways of new communication will maintain help the personal relationship and dignity the person for with dementia. Be Done What Can Communication Communication Of all the complications dementia, of the struggle to communicate may be the most troublesome. Memory loss andconfusion can create barriers in a once close relationship. Inaddition, is it harder to understand the patient’s quizzingwant and one, needs. Avoid loved your remember?” Instead, you offer as,such “Don’t reminders.Speak in a loving, A patient tone. wordsfirmyour of pace tone and loud rapid or may unintentionally express negative attitudes. patience. conveys voice of A relaxed, tone lower Getting a clear response from the patient is not the goal. Communicating to the patient is what is important—not get back. what you to the patient’s confusion.to the patient’s “Kitchen”) to help patient recognize to help “Kitchen”) location carKeep sight of keys out identificationKeep on him/her at all times numbers,(name, contact phone address) rearrange not Do furniture as this may add and try it to avoid throw rugsRemove and electrical cords that could cause tripping Install childproof latches doorknobs or signsPost rooms for (ex.“Bathroom”, Keep theKeep area quiet with distractions few Make what of note “triggers” the behavior Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Creating a Calm Environment Environment a Calm Creating safe. to wander Allow one in areas loved your that are well lit and secure, and take a walk together. communicating fears needs. or Makesure the person is getting the right amount rest, of and food drink. Provide reassurance is one that loved your late-stage may notice the person dementia. You pacing walking or aimlessly as a result confusion, of restlessness is of it a way some, boredom. For or Wandering an may of be as not issue much in Redirect engaging by in a relaxing activity, as such art team Contact music. or Hospice more your for suggestions. individualized Try not to take not Try the aggressive behavior personally. Instead, stay calm and use a soft, reassuring tone. People withPeople dementia sometimes become anxious agitated.or scream, may Some even hit, push. or be discussed with team hospice your so that a paincomprehensive assessment can be done. be frustrated because communication is difficult an complete activity becauseor they can’t that used to be simple. Any changes in behavior should underlying reasons as: pain such illness, or noisy environment or over-stimulation, unfamiliar or unrecognizable surroundings. may one loved Your while the changes can be upsetting, the person is acting not this purpose. on way There are Behavior Challenges Challenges Behavior Each personwith dementia experiences unique changes is in important It behavior. that to note Dementia Symptoms Dementia DEMENTIA CARE Suggestions: day. the during well function to needed sleep the get to them for it difficult make can This night. the through and dusk at confusion and restlessness agitation, by increased characterized “sundowning”, is which experience dementia Some people with dementia. morebe severe with can and aging of normal part Sleep are problems Sleeping comfort. of improve to level the required be may Medications discomfort. help alleviate can compress awarm or applying repositioning such as measures Simple level of his/her pain. determine to each visit it during your use Hospice Team will of tool. Amember PAINAD the is assessment of comprehensive the pain Part symptoms. other or of pain degrees not able is express to person the if untreated and unrecognized go can Pain Pain andDiscomfort Dementia Care 42

Š Š Š Š Š Š Š Š Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Š Š Š Š Š Š Š Š middle of the night. of night. the middle your loved if the one in awakens calm Stay bedtime near agitation cause or upsetting be might Avoid that activities routine abedtime Establish napping daytime Limit bed to going up and getting for times scheduled consistently Establish daylight to exposure increased and activities interesting with days Plan caffeine of alcohol and intake Limit keep attention. and helps gain to Smiling when he/she sit also example sitting, is eye at eye level, contact for Maintain distractions noise and background Eliminate before as Accept much He/she silence. as not talk may respond to time extra give for aresponse, wait Patiently one atime. at questions Ask directions one-step Give Suggestions: snacks. calorie high with able meals be replace may You meals. aboutyour well-balanced hospice team to eating. Talk his affect how can feed oneself to or forgetting depression, eat, need to the recognize to chew to or swallow, inability inability interest, of loss changes: for these reasons, or several reason, a is there for caregiver, the distressing be can habits new eating these While eat. to or ability appetite in changes experiences dementia with aperson Often Eating Suggestions: mobility. individual’s the on effect negative a has which ones, sugary especially snacks, to access limit to better it is case, this ate. In when he last recall to unable or is snacks, and lunch, dinner breakfast, between or differences the of meals, healthy.less He/she timing the not understand may are that from foods foods nutritious or differentiate fullness sense cannot person the some instances, In Overeating Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Avoid exposure to large groups of people groups Avoid large to exposure swallowing and chewing Chop food ease to or puree changed havemay tastes since flavor the of foods Alter foods finger or offer of helpings Reduce size the hidden. hidden. have may individual the forLook snacks schedule meal consistent a Maintain eating and help food away keep focus that from day the throughout activities stimulating Introduce and/or candies low nuts, sugar fruit dried containing cookies pudding, and Jell-O free sugar- such as lower buttooth are calories, in sweet the satisfy that alternatives Provide avoid confusion. to utensil the correct with time oneOffer at a food mealtime during DEMENTIA CARE

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This is an individual hospicewr.org/caregiver-training section on page 16 for more more for section page on 16 Medication Studies have shown that shown artificialStudies have is your loved one a late-riser? one one is loved your loved Does your to the ready, wash room prefer bed? Have before warm and free drafts. of Begin in the least sensitive as such handsarea the body, of and arms. hair Wash last at a separate or time. him/her Give something liketo hold a sponge ball, and soothing play music singor familiar songs. Upon enrollingUpon with the Western of Hospice nurseReserve, hospice your and pharmacist reviewed all current medications with the primary physician. Medications are evaluated for effectiveness appropriateness.and medicines New may be ordered depending the stage on of dementia. In general, medications meant to slow the Alzheimer’s advancement of dementia are no longer appropriate during stages the end the of illness the focus when care of is comfort. on All medications will be discussed with the caregiver(s) team. the hospice by to the Refer information team. ask or hospice your Caregiving Creative beginningBefore any personal care the person, for assuch bathing, consider any sensitivity and try to accommodate Think it. and the when how about person with dementia prefers to wash. instance, For Interventions in Dementia Care Dementia in Interventions Tube Feeding Sometimes a feeding of the placement tube is considered. nutrition the and do not hydration improve comfort, functional status or quality of life for people with dementia. family, each for care andchoice hospice your team willrespect wishes. your surprisingly,Not caregivers are often concerned the person a feeding on tube is experiencinghunger; other patients life of at theend are who however, to communicateable say they experience little or hungerno thirst. or swabs chips Mouth ice can or alleviate what little discomfort they might feel. Medications section page on 23 for Nutrition Refer to the Refer tipsmore and suggestions. choking lengthy mealtimesAvoid which contribute to fatigue alone while one loved your leave not Do eating Keep eatingKeep and speaking separate to avoid Š Š Š Š Š Š Š Š Suggestions: feel swallowingfeel has challenging. become such cases,such eating may be so strenuous as to cause fatigue, changes in respiratory patterns, hoarseness Talk reflux.or careyourhospice with team you if throat, something special to may be done have with to ease the neck head or swallowing. In followingeating. If the patient experiences pain or discomfort in the throat swallowing, when chest or hasor a sensation food/liquid of “sticking” in the swallows mouthful, each for pocketing food of in the coughing cheeks, or sneezing or during/ During mealtimes, the person may experience uncoordinated chewing swallowing, or multiple quality/ frequent (hoarseness/moist tone sound), throat clearing, oral poor and hygiene weight loss dehydration. or cough swallow or and involuntary tongue thrusts are common. Changes may also occur in voice conditions and an indication that dementia is in late stage. Dysphagia managing (trouble oral secretions drooling), or weakness a voluntary of Swallowing Swallowing Difficulties in eating can bethe physicalresult of DEMENTIA CARE Notes altogether. music or song the stop another try feelings. and memories negative and positive both may conjure to music Listening Note: Please Suggestions: movement. and activity vocal eye contact, increased expression, facial in you song, changes notice may familiar a or playing By singing himself/herself. express dementia with helps music aperson Furthermore, spirituality. and of belonging asense bring can and of reminiscence ameans It provides pain. decrease and relieve anxiety person, agitated an soothe can It the brain. of parts different stimulate pitch melody can and rhythm, The dementia. of thestresses easing in effective very is Music Music Connecting with 44

Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Play quiet music at bedtime. bedtime. at music Play quiet about it stories tell and he attended concerts from music to Listen music or classical big band for example, music, favorite Rock or move his to gently tempo arelaxed with music recorded play familiar times, meal During sheets the changing or bathing like care personal completing Game”, “Take while Ball Me the to Out such song, as afamiliar or hum Sing If certain types of music cause agitation, agitation, of cause music types certain If Suggestions: attention. his/her touch Use gentle tension. when you get need to and depression anxiety, fatigue, reduces experience improved emotional This of well-being. a sense and of acceptance touch afeeling gentle provides A of isolation. afeeling avoiding and connecting away be touch of can dementia, with For aperson The Importance of Touch Š Š Š Š Š Š Š Š Š Š sensitive. sensitive. and fragile be may skin that mind Keep in inflammation or irritation with Avoid of skin areas move to positions him/her Do not require neuropathy for people with comfortable more be may which over clothing, Massage do to you going what are her exactly him/ telling about your clear intention, Be DEMENTIA CARE

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hospicewr.org/caregiver-training physically and emotionally draining, and operates a timelineon may experience all its own. You physical, emotional, intellectual, behavioral and spiritual reactions. Talking the grief about are experiencing you sometimes requires help from a professional. Reserve the Western of offersHospice bereavement services that provide support, encouragement, education and resources during thirteen months following one. the death loved your of Unique Grief and Loss for Loss and Grief Unique Caregivers Dementia Feelings grief of and loss can occur at any time caringwhen a person for with dementia – not just in the final feel You may angry stages. the disease,about saddened thatstruggle you to communicate, is depressed or one that loved your Focusing knew. longer the theno person on you versus the loss memory of abilities,person or now, lessenmay help the grief that areexperiencing. you When is the end caregivers near, deal with what is referred to as anticipatory grief – the reality that death is inevitable. seemed to the end Previously, be far in the future, changes but in the last few mademonths have the journey of the end closer. There is right no wrong or to grieve, way no calendar and magic no solutions. Feelings griefof are very powerful and often misunderstood. is It Celebrate religious/cultural holidays that are a family tradition. Give the patient a spiritualGive symbol to hold Provide an exercise in guided imagery or meditation fromGet local help your religious figureof your faith Read familiarRead prayers, poems, stories, Scripture passages and blessings TVView programs religious/spiritual of nature Listen to sing music or religious hymns Make religious cultural or rituals services or available Stimulate the senses especially through scents, visuals and textures videosPlay nature scenes of of with soft calming sounds Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Notes Suggestions: Suggestions: with the heart rather than the intellect. Re-affirm that life is available is precious, love in and the joy present moment is possible. with end-stage dementia, the emotional aspects of spirituality are meaningful, more as they connect and purpose in life. is expressed It in our beliefs, actions, faith and relationships with God a or self,higher others power, and creation. persons For Spirituality and People with Dementia Dementia with People and Spirituality Spiritualityis a connection tohigher a sense self of CAREGIVER NEEDS Here are some valuable suggestions: person, youneedto care foryourself. In order to effectively care foranother overwhelming. Pleasebeaware of: Caregiving responsibilities can feel you say. need that to your things loved with one, saying business Youunfinished someto close time intimate. find may become may more emotionally your relationship You of self-worth. sense together; time in youryour loved and laughter moments of and one joy find may caregiver. as a stronger or a peace inner mayrewards other of Youyoufeel asense you find experience may together. Unexpectedly, memories positive and lasting create to time avaluable be can acaregiver Being heal. and grow learn, to chances are there sadness, and of hurt midst the even in that us have They taught process. changing alife- is illness for aserious someone with caring that caregivers from we have learned years, Over the care. you providing are time the during wellbeing and life your affect may they and your feelings are They neither nor bad. good are feelings These time. this at of feelings avariety experience to It not unusual is stressful. and rewarding for both be someone can Caring or member closefriend. afamily often most is Acaregiver person. ill for anyoneaseriously is who cares you Acaregiver acaregiver, are. you not yourself consider may Although Caregiver Needs - We Are Here for You 46

Š Š Š Š Š Š Š Š Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Š Š Š Š Š Š Š Š negative comments. comments. negative on Try not dwell to everyone’s expectations. people. You not able up be may live to to all to things all be no one can that Realize empowering is Information Talk your to physician. care. receiving person about of condition the the yourself Educate concerned who are others to by phone updates or email of relating charge in be to or member friend afamily Select privacy and support both have you can that so hours visiting Establish plans. making Difficulty resentment or guilt obligation, of Feelings challenges Emotional isolation Social worries Financial activities of “normal” A loss control of loss A of unknown the Fear fatigue Excessive Maintaining good health is a priority: apriority: is health good Maintaining peace and confident in caring for lovedyour one. caring in confident and peace you helping and feel your more needs at supporting your questions, answering to We committed are over your Hospice these Team. with talk Please help to you some ideas Here started. are get care. receiving person the and of yourself care taking toward step first the is acaregiver as your needs properly, eat rest, Identifying exercise. enough and Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š What are my financial obligations? obligations? my financial are What in pain andbeing My loved one suffering my loved one missing and alone Being you? worries What outings? we take Can possibility? a starvation is my lovedIf one not eating, is medication? How doIadminister have to would you help with? like What

providing care? doyou have questions about What care Personal night the through Getting Shopping chores Household Get Get

CAREGIVER NEEDS

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you cannot is common. The such assuch to side side. with arms, chest hospicewr.org/caregiver-training /decrease in the amount/decrease of amount urine of and will it be darker in color. about time,about place and identity and close of familiar Reminders people. as to what day is,it what time is, it and is who in the room will be comforting. Soft music and dim lights may be calming. rails side Keep for up safety. things and people of Visions see are common and necessarily not frightening, comforting but to the patient. movements Seizure-like faceor in the last minutes few death of are a part process. shutdown These the body’s of are to be considered not seizures seizure or activity. movement Unusual eye Incontinence urine/darker urine color may become a The nurse nursingproblem. hospice or assistant obtain can you help pads to place under the patient for more comfort and cleanliness. may notice a decrease in the You Restlessness confusion or patient may become increasingly confused Š Š Š Š Š Š Š Š Š Š and is a result of

a change metabolism. in the body’s to Try time more spend with the patient during those times greatest of awareness. mouth may drymouth become and will to need be moist. The patient willkept experience not hunger. arouse to Sleeping/difficult Decreased need for food and drink, and food for need Decreased difficultyswallowing becausethe body functions are gradually slowing down. There may be difficulty inswallowing. The Š Š Š Š Call your Hospice Care Team Care your Hospice Call  ▸ you and the patient duringyou the last days and hours. team hospice willYour coordinate this supportive you. for presence support you throughsupport you this difficult Youhave time. undertaken the most precious service caring by is our It desire one. to be present with a loved for what you see and experience. Your hospice care hospice seeand what experience. you Your team will identify you help these changes and you may notice physicalyou changes taking Not place. all these of signs will appear at the same time and appear maysome at all. never Please us let know Approaching Death Approaching As the patient prepares the final for stageof life, Signs and Symptoms of of Signs and Symptoms help you do what feels right you help you. for There may be differences how familyin members and friends respond. Some may privatewish to have time may Some with wish one. team their to hospice providepersonal loved will care. Your and support you From one-to-three to focus inward. world There months death, is before a is a person’s it common for shift from social more away the outer This world. is a withdrawal not toneed a focus from but you, love of is presence energy very important. inward. Your prepared, is it natural but confused to feel and upset. Be kind and gentle to yourself. may know what not to expectTeam during will Care finalHospice Your the patient’s do everything days. confident more less feel theyYourand can team you toanxious. help canprovide bedside oneducation to be informed want you things care. receives as and she We or one he can loved your say to help you do or Final Days Days Final life journey is unique, toward death. andEveryone’s sois This everyone’s is a difficult you because time CAREGIVER NEEDS Notes ▸ Signs &Symptoms of Approaching Death 48

CONTINUED FROM PAGE 47 Š Š Š C aregiver TrainingGuide Š Š Š cold. Fevers are common as well. well. as common cold. are Fevers too is person the that indicate necessarily not do and down slowing blood circulation of aresult are color.in symptoms These much is darker of body the underside the color. in bluish Youand that notice may become to cool touch the to legs and arms Cooler body temperature doing. are you what patient the to Explain diminish. to of senses the last the be to thought is hearing hear, since can care receiving person the that Assume room. the on in light soft Hearing and vision sounds. breathing the quiet usually side will on patient their the turning or of bed head the the of it.aware Elevating not even may and be this from discomfort not feel does any patient The throat. the back the of in collecting secretions of oral amount asmall and cords vocal relaxed Moist-sounding breathing may change. Keep some change. may may cause the the cause may is caused by by caused is

home at the time of death. Try not be alone during Try not during alone be of death. home time the at funeral and your physician notify will Reserve Hospice of Western the time. this at incorporate to you would like practice/ritual or unique special let of know any yourPlease hospice team team for support. for team Use your hospice needs. caregiving with assistance for Ask friends. and Include family time. this Š Š Š Š Š Š as directed by the nurse. by nurse. the directed as approaches medications but give to continue Pain and discomfort voice. acomforting in speak and remains of hearing sense the that Assume Unable to respond life. of stages apnea), final the in occur may (called of no breathing second10-30 periods patterns breathing in Change to touch or voice. voice. or touch to may diminish as death death as diminish may , including CAREGIVER NEEDS

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hospicewr.org/caregiver-training bank security and appropriate box follow procedures) Human Resources at the deceased’s place was working) (if employment of he/she thereto discover are whether monies you are death entitled as to such vacation pay, benefits, final wages,retirement plans, or other types compensation. of attorney to discussYour estate matters. Do any the pay deceased’s of not debts until after meeting with a lawyer. IRA Life insurance policies plans Pension 401K plans Utilities Stocks/bonds. Government agencies or benefitsprogram, including alliances unions or that may be making payments to the deceased the decedent by Creditors money owed cards,(credit mortgage automobile company, loan agency) SocialSecurity Administration to determine areif eligible you benefits for The deceased’s bank and handle financial matters accounts; joint determine (roll over if deceased had a safe a or deposit box Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Cancel forward or mail and newspaper delivery if necessary. Cancel automatic payments like annual memberships or subscriptions and on-line bill payments. Make arrangements final for taxincome return if appropriate and estate tax return as necessary. Request change of beneficiary or change of Request the following: name forms from Contact the following: the following: Contact contracts. Bank books dischargeHonorable and/ papers Veterans for claim number VA or titleAutomobile and registration papers Loan and installment payment books and Marriage Certificate Birth Certificate Insurance policies Deed and titles to property Stocks, bonds IRAs and/or 10-15 copies of the death of copies certificate10-15 SocialSecurity card Attorney hospice teamhospice member is present at death, not should callyou immediately Family Funeral Home Physician Hospice of the Western Reserve the Western of – ifHospice a Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š After the Funeral the Funeral After documents: Obtain the following deceased, with check the insurance company regarding any changes in coverage. Determine needs a home to not or whether be secured is If homeowner empty. if is it now Immediately Immediately team is hospice care Your Notify necessary parties. these phone calls. to help make available taken care and of when. ability to take care important of matters thatmust be attended may to in think, a timely manner. You “Where do I begin?” and at a loss feel to start the process. Having a checklist be more you may help efficientand thorough. Although this list not is exhaustive, it highlights important tasks needthat to be Important Things to Attend to When Someone Dies Someone When to Attend to Things Important Oftendeath when occurs,expected even death, the sadness can be overwhelming and interfere with the GRIEF AND LOSS Suggestions to Promote Healing at hospicewr.org/grief found be can resources Additional time. you that at to explained be will support individual and groups include which of services Avariety death. the you contact after will and your to family assigned be will Abereavement your coordinator life. in as youto adjust changes andsupport guidance offer HospiceThe to continue Bereavement Team will of aloved death the one. you feel after may for sadness deep the prepared however, no way grief, fully be is to there anticipatory with grief.” Even “anticipatory as known of grief you encounter feelings may ill, for someone seriously who is caring of the course During timetable. their and own wayon their own in differently, grieves person Each way grieve. to or wrong no right is There responses. spiritual and behavior, intellectual social, physical, involves that of emotions coaster It aroller is loss. any to reaction natural necessary, anormal, is Grief Grief andLoss 50

Š Š Š Š Š Š Š Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Š Š Š Š Š Š Š Have realistic expectations of yourself. of yourself. expectations Have realistic time. takes Grief yourself. with patient Be responses. grief normal with familiar Be regret. and guilt Confront journaling. outlet: music, art, acreative Find Don’tthetears. fight story. the Tell re-tell and Reach out others. to work. play, and rest, your life: meditation in you have that balance Check frequently food healthy eat and exercise to sure Be necessary if physician, acheck-upSchedule your family with yourself. to kind Be stage and use simple and honest words or phrases. honest or words phrases. and simple use and stage developmental of child’s the aware Be understand. can they alanguage in children to Speak of ways. avariety in expressed and intermittent be can of children later. grief The or years months until itself not manifest may grief the Also, big feelings. these let manage alone identify, to However, ways. unable unique often are they own their in grieve will children adults, Like GrieveChildren Too rituals. rituals. or plans funeral any in included be to them allow music, and and include art that expression feeling for opportunities provide about future, the reassure honestly, and simply questions all answer adults, As mechanisms. coping less but with adults, to similarly reacting to dying and death of about specifics the curiosity aconcrete way a morbid to in death understand to moves wanting from child The of death. understanding their does so mature, children As routine. astable and reassurance, comfort, physical aneed for and of abandonment, fear thinking, reversible, magical and temporary as of death belief of time/space include alack concepts, children old year of 3-5 responses grief and developmental Accepted irreversible. and permanent it is – that death of elements key the understand children seven, most By age age. ayoung at of death understanding the in variability wide is There with this process. help who can bereavement our coordinators, access for your our hospice team Ask of feeling. how are they understanding better a get to questions You children ask need to may children’s packet or to to or GRIEF AND LOSS

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hospicewr.org/caregiver-training You may have an may have increased You When someone dies When oftensomeone we Sleeplessness is common shortly Some bereaved feel a sense feel relief of bereaved after Some the Forgetfulness and inability to concentrate to inability and Forgetfulness Many experience people confusion, memory loss and difficultyfocusing on tasks atthe beginning of their grief is helpful It to journey. write lists, make notes and to the keep familiar. Guilt and regrets Guilt and may be wonderingsecond-guess ourselves. You had or happened if what have done would you said things blameYou may yourself for differently. things Remind yourself had over. control no you didcould the at the best time.you you Relief may constant your be relieved of worries,death. You responsibilitiesyour caregiving, of one loved your or suffering. This normalis a part of the griefprocess. Sleeplessness difficulty may have after the death. You falling asleep, staying may asleep wake very you or early. Thoughts and deep feelings often surface at night. appetite in Changes decreasedor appetite. You maydeep a longing feel your for You Not only Not will there be times sad, feel you Shock and numbness Shock is a typical grief Anger the intense of is one emotions that is Notes person died, who persons responsible, yourself, the situation God. or a part the normal of grief reaction. everyone Not maybe angryfeels anger, many but You do. at the bring tears. Anger you may experience sadness.you of waves These waves are often unexpected and overwhelming and can sense their presence. Sadness beloved. It takes It timebeloved. the to reality accept the of loss may findandyourself you searchingyour for might think You hear or loved. their you voice Longing reaction. You may as feel are if or autopilot on you reaction. You just going through the takes motions. It the mind time to grasp that death has occurred. Common Grief Reactions Reactions Grief Common Shock PERSONAL PLANNING have been discussed. have discussed. been that instructions and follow values to the needs decisions healthcare make to named person The permanently. or temporarily either communicate, to when unable her behalf on his/ decisions healthcare make to advocate an name to aperson allows that A document Healthcare Power of Attorney hospicewr.org/decisions at or online team your hospicefrom care obtained be can form Will Living A standard decisions. make to unable becomes individual an if acceptable is treatment life-sustaining what members family and physicians tell instructions Written Living Will The hospicewr.org/decisions for member acopy, ahospice team Ask or visit forms. donation tissue and power of attorney healthcare will, Ohio’s and living information resources, making decision includes Known, Your Choices Healthcare Making Directives: Advance titled booklet, all-inclusive This forms. these with assist to guide afree access Please time. any at changed be choices. can They care or her health own his coverthey or communicate not able is make to when become person the active only documents These for healthcare. powers of attorney durable and wills of living form the in directives advance for you by developing right are choices that the your loved make and to prepare one can your loved what You one wants. understand to impossible just or difficult too late, too be may it crisis, ahealth During health. good in still are when doit to you is time but best the decisions care health for future way plan to no easy is There Advance Care Planning Personal Planning 52

C aregiver TrainingGuide . .

arrest (breathing stops) but comfort care will will care stops) but comfort (breathing arrest stops) or apulmonary (heart arrest acardiac is there that time the until care medical receives standard order, aperson Arrest Care Comfort aDNR With life. save to or sustain measure no resuscitative but suffering, and pain eases that care receives any order, aperson Care Comfort aDNR With Ohio. in orders DNR of types two are there stopped working; lungs or heart the if would not started be resuscitation) CPR (cardiopulmonary that means This nurse. practice advanced or an by aphysician prepared it is aphysician’s order is A Do Not order; Resuscitate Comfort Care Protocol Do Not Resuscitate (DNR) arrangements will be made for further discussion. discussion. for further made be will arrangements and member ateam ask please donation, tissue and about organ more you information If would like for you. made be can arrangements these so team your hospice care inform please donor, or tissue organ you another. to an If are life of agift given by having eased somewhat was loss and pain their that said have later families many but grief, intense when you experiencing are time a at make,especially to decision adifficult is this that saved prolonged, be or improved. We realize can of others lives the such donations, Through of life. gift the are donations tissue and Organ Donation and Tissue The Gift of Life:Organ you if need avolunteer attorney.team your hospice contact please care for free; available Volunteer are document. attorneys this obtain to aide or legal attorney an consult to It advisable is responsibilities. financial certain assumes or decisions financial specific make to authority the person another someone which gives in document A legal (Financial) Power of Attorney continue. PERSONAL PLANNING

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Helps us hospicewr.org/caregiver-training Use pictures, Use items Reflectivepassages of sacred text, Music affectsour feelings and the the departedthe inspired us. Music atmosphere in remember our which loved we Select hymns,one. songs, other music that or favorites, brings one’s are loved comfort your celebratesor their life. Readings poems, and short stories are all helpful in remembering are the person celebrating. you faithSome traditions may requirescripture be read, many but faiths are flexible and will other typesinclude readings of as well. life of Symbols avocations, hobbies, from a person’s important moments in life, symbols of accomplishments, or milestones achieved. meditation eulogy, Homily, integrate the readings, music, and symbols life and indicateswith one’s the ways loved Š Š Š Š Š Š Š Š Hospice of the Western Reserve’s spiritual Reserve’s the Western of Hospice care coordinators can assist in planning you a Memorial and areService one also loved your for available to conduct a memorial service. Things to Remember: Remember: to Things

Notes supportive to both you. of acceptance their about finalon momentsearth, planning a memorial service jointly can be very to the immediate survivors. isalso It common the patient tofor participate in this planning. If the patient has an reached understanding and In most cases planning a memorial service falls think hisabout values, her or special events, life’s travels, hobbies, work, and contributions. will It with cope grief. your you help family is a step in the healing process. Sacred texts, poetry, and music are commonly used in planning a memorial service.life; on person’s Reflect the for both thefor deceasedand the survivors. the Despite grief and fatigue, spending time with friends and The Memorial Service: A A Service: The Memorial Life of Celebration A memorial service provides a sense completion of Memorial Planning Planning Memorial PERSONAL PLANNING Notes Court: of Probate functions two are There needs. for legal attorney an consult to you Hospice urges advice. of Western the Reserve legal not information, is explanation following The Probate 54

2. 1. C aregiver TrainingGuide provide this service.) service.) this provide cannot volunteerWestern attorneys Reserve (Hospice of the process. on this family the instruct to needs Alawyer proceeding. alengthy in on by court the ruled then is etc.).Thisdue confusion, to determination own on their decisions make to unable (medically incompetent be to by a physician determined become is involved patient the if may Court Probate alive, is aperson While estate. an probating to related questions any answer can attorney An process. this regarding attorney an with We you consult to her assets. advise of his/ proper the distribution involved ensure to becomes Court Probate dies, Once aperson discharge papers will be needed. needed. be will papers discharge The patient’s of Veteran Affairs. Department the to directed be entitlements regarding questions all that It recommended is veteran. discharged honorably- an is patient the if to entitled be may family the that benefits burial specific are There VA Benefits Medicaid case worker for more information. worker case for more information. Medicaid your Contact state. the through available expenses There Medicaid Recipients 1849 Prospect Avenue, 2ndFloor Veterans Service Commission Veterans of Foreign Wars: 800.827.1000 assistance: and information Benefits 44114 Ohio Cleveland, 1240 East9thStreet Cleveland Office Regional of VeteransDepartment Affairs United States Government 800.750.0750 OhioRelay (TTY) Service 216.698.2600 Cleveland, Ohio44115 may be may financial assistance for burial burial for assistance financial 216.522.3510 or PERSONAL PLANNING

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hospicewr.org/caregiver-training . hospicewr.org/sharemystory For many, healing many, For is in the telling. Visit our testimonial page at to share story your more offer with us. You’ll comfort and support to other families than you imagine. can with Us Walk the annualEach June, attracts to Remember Walk thanmore 3,000 friends the Western of Hospice of Reserve gather who to life celebrate and to Details ones. remember their loved are available at hospicewr.org/walk Hero a Hospice Become goodDo while having fun with friends, your service group religious civic or club, organization, Organize company. or a putt-putt golf outing. you a bowling provide the help We’ll Hold event. toneed get started and encouragement along the way. Volunteer byMany our been touched of volunteers have talents have that our experience. a hospice You patients and familiesvariety a offer and need we of volunteer opportunities for individuals and groups. groceries. up Pick Feed a pet. a story. Read often decide and how want in what you way You to help. story your Share

for options. hospicewr.org/tributes Care Other tribute Center. garden options include dedicating a granite personalized bench with a name sentiment or and planting a tribute tree. Visit gardens Ames - David House, Simpson Hospice Family and House the Medina Hospice Inpatient Granite Tribute Granite placing by one an loved your inscribedHonor brick or instone any our of three memorial “thank you.” “thank Brick or a Memorial Inscribe or transferor a gift directly from IRA. your Please us intentionslet your know of so that can we say you have been helped. Consider been helped. have the futureyou and Reserve amake the Western of Hospice Hospice beneficiaryyour of willor life insurancepolicy What wish do you philanthropic your legacy to wish you other Perhaps families tobe? help as caregivers through you helped who a difficult time. Plan an Estate Create will their memoryhonor withlasting a gesture that others, helps while saying “thank to the you” Request Donations Request Reserve the Western of and Hospice Include obituary. You one’s in loved your hospicewr.org In Lieu of Flowers, Flowers, Lieu of In What a wonderful, lasting to carry way the memory on love. those of we ensure that compassionate care will be available to other families in need. Donations any of size are always Gifts welcome. directly support patient care andfamily services. And there are many additional, meaningful ways to give back. Giving Back Back Giving Families and friends often can ask, thank we “How services?” your for you giving By help back, you PERSONAL PLANNING  Phone Address   Western the of Reserve. Volunteer document. in the named through others available are and Hospice family share itand Attorneys with members it one. youtime this you you at If If prepare encourage to it awill, we awill, good do do not have is have idea review to Attorney  Phone Address    LOCATION Personal Information andRecords Checklist 56

Real Estate Deeds Deeds Real Estate Power Durable Attorney of General Insurance Agent/Broker Insurance Policies and Policy Numbers Will Durable Power of Attorney for Healthcare Living Will C aregiver TrainingGuide

Life insurance (group and/or (group individual) insurance Life

Location of property Location Disability insurance Disability Renter’s insurance

Titles in name of name in Titles Health insurance Health Home insurance Home Executor of will of Executor Auto insurance Auto

Name Name Name ______

PERSONAL PLANNING

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hospicewr.org/caregiver-training ______Name Account # Account #

Name is under box

City, state, federalCity, tax

Location and box key of Name

Name

(e.g. installment purchase agreements) (e.g. Credit cards cards Credit Business records etc. jewelry, furs, for Receipts Military discharge papers Military papers discharge Marriage certificates / Divorce titles Automobile Birth Certificate Card Security Social Returns for the years past several Safe Deposit Box Checking account Checking Savings account Savings Brokerage firm/broker Brokerage Stocks, bonds, certificates of deposit Mortgages, records, or mortgageMortgages, or records,

    Contracts When the person receiving care is no longer able and a transfer to drive, change of title primary in is insured recommended.     





 Address Phone    payments information Personal Information and Records Checklist Checklist and Records Information Personal LOCATION PERSONAL PLANNING Charity of Choice Charity Military Service/Recognition Achievements/Honors Major Organizations/Offices Affiliation Religious Church Major/Area Employer No. of Yrs. ______Loved Ones Other of and Spouse Names Occupation from area the to Came Birthplace City Address Name Patient Information families. our to meaningful and is appreciated of flowers. donation lieu in Every gifts or direct to gifts tribute choose make to friends and Some families time. important this during We for honored you your care are to family and arrangements. other making and notices obituary for placing responsible who is director funeral the to forwarded be then can completed The form complete information. gather and talk, and of your loved think to death done the to best prior one, is time when is there possible. This to any help way in you willing are members Hospice advance. done be staff in can of most this task, important an is director funeral the and for newspapers available information memorial accurate Having ahead. time the for in planning assistance offer to is able we this do One of ways to the are mission. of our part avital is illness aserious with of dealing stages many in families our Supporting Memorial Worksheet 58

C _ aregiver TrainingGuide ______

______State ______When ______Zip Code ______

PERSONAL PLANNING

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hospicewr.org/caregiver-training ______Specific instructions Cemetery Name Number and Plot Telephone Address Funeral Director Funeral Funeral Home information here: need assistanceneed with funeral planning. made have funeralIf you arrangements wish or to use the services a specific of funeral director, record that Also, the purchase an of “Irrevocable Burial Contract” is considered a legitimate down to spend liquid way assets if qualifying Medicaid. for Speak with socialthe spiritual hospice or worker care coordinator if you Contract”. ThisContract”. is a preplanned and prepaid funeral. Along with peace-of-mind, preplanned funerals and may also price. secure a lower provides an opportunity all for parties involved to share their ideas at a less andstressful choices time. Most funeral directors home the opportunity welcome to answer questions. Contact the funeral of home to arrange choice your a meeting. The funeral director home can also assist with an “Irrevocable Burial Memorial Planning Memorial manyFor patients and families,pre-planning the funeral offers an control of comfort.amount and It REFERENCE with the patient and family. family. and patient the with hospice care continuing to alternatives discuss will team hospice the care stabilized, has illness the if or improving is patient the If ill. seriously is patient the that agree must team hospice the care period, end At the of each periods. of 60-day number indefinite an followed by benefit periods 90-day two of Hospice Benefit consists Medicare The Periods Explained The Hospice Benefit Hospice EligibilityExplained coverage. your insurance with manner usual the in treated be may problems medical Unrelated illness. serious the to apply only restrictions These patient’s the Dare responsibility. Part under authorized not medications for Payment admission. upon assessed be will Dcoverage Part Medicare care. of plan of for outside this patient the obtained for care not responsible is and of care on plan the based care Therefore, Hospice delivers of Western the Reserve provided. care for rates daily specified at directly Hospice pays of Western the Reserve Medicare by Hospice of Western the Reserve. authorized pre- be must diagnosis ill seriously the to related or equipment supplies, medications, services, All patients. ill of seriously forneeded comfort the equipment and supplies medications, services, hospice The hospice benefit care. covers needing for those program aspecial provides Medicare and OtherInsurance Coverage The Hospice Medicare Benefit Reference 60

Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Patient has months rather than years to live. live. to years than rather months Patient has Medicare-approved) is Reserved approved hospice (Hospice of Western the aMedicare- from Patient receives care benefits care hospice choosing astatement Patient signs illness the serious have confirmed director Patient’s hospice the and medical doctor A Part Medicare Patient has your hospice care team day or night before making before making or night day team your hospice care Call room. emergency the including illness, serious the to related stay hospital of any preauthorization the requires Benefit Hospice Medicare The help arrange transportation. will members hospice the home team needed, is out of such by If ahospice atrip nurse. assessed be must need for The this necessary. be may units care hospice inpatient or one three of our ahospital in at home,days a few manage to difficult proving are that of breath or shortness vomiting, nausea, acute pain, increased such as symptoms has apatient If period. the enter next will Hospicethey Benefit, Medicare the enters patient the time next The lost. over, are is period however, that in left days the Hospice Benefitbefore benefit a period Medicare the discontinue to patient the allows Medicare coverage or if you have any questions. you orcoverage if havequestions. any your to healthcare changes any worker with social or nurse your primary contact coverage. Please the regarding company insurance the contact We will program. their hospice within coverage have carriers insurance Many, not private most, if Private Insurance program. the as Medicare benefits same the has coverage, which Champus with persons for those of provider the hospice be services can agency, we aMedicare-certified we are Because (TRICARE Insurance) The ChampusProgram well. month as every hospice eligibility we verify that asks Medicaid month, every reissued is card this Because benefit. this for eligibility confirm to used be will card patient’s The Medicare. Medicaid as coverage thesame Hospice Benefit provides Medicaid The Medicaid hospital. the to a trip REFERENCE

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hospicewr.org/caregiver-training Possibly, for some services some for dependingPossibly, the on insurance care of coverage and the your level Medicare receives. the one of pays Hospice loved ReserveWestern directly day each for hospice is responsible care. for During care, hospice a billthe patient receive should not services for Medicare. by The currentcovered arrangement the patient has under Medicare Part B will costs. If the any doctor’s continue to cover questions regarding up come billing, ask your carehospice team help. for Will there be a co-pay or deductible for be a co-pay there Will hospice services? company. Payment plans Payment and optionscompany. can be arranged in situations payment would where create a financial hardship patient for or the immediate family members. A patient family or may alsorequest a financial assessment to determine eligibility payment for plans and other financialoptions. A team social can information provide more worker and to our financialconnect you services team. The patient immediate or family will be billed anyfor amount applied toward his/her personal co-pay afterdeductible and/or the partial payment has from been received the insurance

Billing Q: A:

physician and/or facilityphysician and/or contracted not with Reserve the Western of Hospice Medications underMedicare covered not Part D. Room and board fees not covered by the by and boardRoom covered fees not third party payer Residential and room care) (level of board charges inpatient at a hospice care unit Any cost incurred treatment for with a Deductibles and co-payments Care and treatment no providedwhen insurance coverage is available Care and treatment related not to the serious illness Š Š Š Š Š Š Š Š Š Š Š Š Š Š Notes by Hospice of the Western Reserve the Western of and in Hospice not by compliance with the agreed plan upon care of may include the following: Financial Responsibilities Financial understandI (we) that costs which are approved not REFERENCE Hospice of the Western Reserve and agree to: agree Hospice and of Western the Reserve I (we) from have for consented hospice services Patient Responsibilities 62

Š Š Š Š Š Š Š Š Š Š C aregiver TrainingGuide Š Š Š Š Š Š Š Š Š Š than 911, for immediate assistance. 911, assistance. than for immediate Hospice rather of Western the Reserve, Call symptoms. or condition of change questions, any with team) on-call the hours, after (if hospice the team Call leader. team the of assistance the with scheduled be will visit leave subsequent The home the immediately. will they and courtesy, such respect afforded not are they if that understanding courtesy, and respect with Treat hospice caregivers resolution. the with assistance further office for team designated the at contacted be may leader team The nurse. primary hospice the through issues Resolve care requests. my fulfill to attempt every make will team the that understanding the with advance in 72 hours than less for no volunteer support requests Submit visit. of scheduled the time the or change cancel Ineed to if team hospice the care Notify events. unforeseen and conditions weather traffic, accommodate to time scheduled the after beforehour and one half have allow Imay to that understand I members. hospice team with scheduled for visits the home at available Be and me. to services and care providing agencies of other team hospice the care Inform administration. medication and treatments care, involvemay personal that of care management the in Participate of life. quality and living of daily activities for my care, goals discuss continuously and physician, the includes which team, care hospice the conjunction with in of Care development the in of my Plan Participate following steps: steps: following the you we take to urge provided, care the with If are satisfied not you care. your problem affecting any We regarding us to you speak to encourage care. patient ideal to committed is Western Reserve Hospice priority. of our the is Your satisfaction Grievance Procedures more at Learn Bill of Rights Patient andFamily Š Š Š Š Š Š Š Š Š Š Š Š in the evening, request the supervisor on-call on-call supervisor the request evening, the in weekend the or during occurs concern this If leader. team the call resolved, way. not resolvedbe this your is concern If worker. will or social concerns Most nurse your primary Talk over with your concerns problem to: problem refer the to you have right time, the At any 216.383.3730. at Officer 216.383.3773 Clinical or Chief the at Officer Executive Chief and President the call your to satisfaction, addressed been not has your concern/complaintIf still hours. 48 within concern your to respond 216.486.6007 who will at Officer Quality the or write Call 216.255.9071. by calling call on- You administrator the contact also may nurse. on-call the when calling of Health hotline: 800.342.0553 800.342.0553 hotline: of Health Department Ohio toll-free the Or, call 43215-2429 Ohio Columbus, Floor 2nd Street N. High 246 Health of Department Ohio hospicewr.org/rights . REFERENCE

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hospicewr.org/caregiver-training disclosures health of information confidential request to receive To communication access their protectedhealth To information for inspection copying and/or amend their healthcareTo information request an accounting disclosures of To of health information. The privacy policies detail the requirements these of each rightsfor and provide procedures for implementation. Staff and volunteers at the agency are provided with periodic training regarding patient rights with respect to health information. To have electronic have access to the agency’s To Privacy of Notice Practices via the website hospicewr.org/privacy the organization’s of copy a paper receive To Privacy of Notice Practices request upon request restrictionsTo the uses on and Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š 17876 St. Clair Avenue Avenue Clair 17876 St. Ohio 44110 Cleveland, 216.383.3745 or 216.486.6007 Phone: [email protected] Email: HIPAA hotline voicemail: 216.383.6675 How to contact the PrivacyHow Officer (Vice President of Quality) CHPCA CNP, MSN, Tyler, Mary Kay Officer Vice President of Quality/Privacy Inc. Reserve, Western Hospice of the Patient Privacy and and Privacy Patient Confidentiality The agency implementspolicies and procedures to accommodate patient privacy rights as required andby specified in Privacythe Rule of the Administrative Simplificationprovisions of the Health Insurance Portabilityand Accountability 1996. Act of Western Hospice of the for by cared Patients the following have and its affiliates Reserve rights: privacy

Phone: 216.486.6007 Phone: Email: [email protected] 17876 St. Clair Avenue Avenue Clair 17876 St. Ohio 44110 Cleveland, Mary Kay Tyler, MSN, CNP, CHPCA CNP, MSN, Tyler, Mary Kay Vice President of Quality/Complance Officer Inc. Reserve, Western Hospice of the Hospice of the Western Reserve Reserve Western the of Hospice Office Compliance Compliance Officer President of (Vice Quality) has access to the Compliance Hotline voicemail box. follow-up, if necessary. anonymous However, messages will also be accepted. Only the regarding unethical illegal or at, or by conduct involving Individuals the agency. will be asked their nameto leave so they can be contacted for can leave a confidentialcan leave message for Vice the President Quality of if aware an they of become alleged wrong doing if or any they have concerns independent contractors, patients and families (7)seven Individuals days 24 hours a week, a day. Hospice of the Western Reserve’s Compliance Reserve’s the Western of Hospice Hotlinevoicemail is in box use place staff, for by e-mail calling by or the Compliance Hotline voicemail 216.383.6688. at box Anyone canAnyone report concerns regarding a lack of compliance in person, writing, by via voicemail, report any activity aware that they of become violates any regulation. law or agency, everyone has everyone agency, the responsibility to act in a manner to actively the law, which upholds participate in compliance, and promote and to toleratefraud, no wasteabuse or in conducting our businessin or delivering services to our patients and families. the of As volunteer or an employee regulations in providing care hospice and services to the communities serve. we The agency will In concert with our mission,the of Hospice ReserveWestern operates in an ethical and conscientious manner; adhering to laws and Corporate Compliance Plan Compliance Corporate conduct of Standards REFERENCE Notes Some examples of ethical issuesinclude: community. the of members and providers healthcare families, patients, members, staff among dialogue conversation and stimulates that aformat held in are Discussions care. patient to relating matters on ethical support and guidance provide to formed was Committee Ethics Our Ethics Committee 64

Š Š Š C aregiver TrainingGuide Š Š Š spokesperson spokesperson afamily identifying and decisions make to patient’s a capacity Determining treatment refuse to A patient’s right hydration or nutrition or supply a patient’s withhold to decision The or 800.665.2619 (answering service) after hours. hours. after or 800.665.2619 service) (answering 800.707.8922 4:30 to 8a.m. p.m. weekdays calling reached be by may member Committee Ethics An confidentiality. strict with handled are matters All family. and or patient the providers medical other by physicians, made decisions those It not replace does manner. a non-judgmental in support and guidance but provides one that body, not adecision-making is committee The REFERENCE

. , 65

hospicewr.org/caregiver-training https://ocrportal.hhs.gov/ocr/portal/lobby.jsf You can file a grievanceYou in personby or mail, fax, email.or filing help need If you a grievance, Mary isavailable you. 216.383.6688 to help Kay Tyler can also fileYou a civil rightscomplaint with the DepartmentU.S. Health of and Human Services, Civil for Office Rightselectronically throughthe Office for Civil Rights Complaint Portal, available at mail by or Department at: U.S. phone Health or of and Human Services, 200 Avenue Independence HHH Building, 509F, Room Washington,SW., 800–537–7697 1–800–868–1019, 20201, DC; Complaint(TDD). forms are available at http://www.hhs.gov/ocr/office/file/index.html

Information written in other languages Qualified interpreters ƒ ƒ ƒ ƒ not English,not as: such Qualified sign language interpreters Written information in other formats (large print, accessible audio, electronic formats, other formats) Provides free language services to primary whose people language is ƒ ƒ ƒ ƒ ƒ ƒ Provides free aids and services with topeople disabilities to communicate effectively with us, such as: 216.383.6688 [email protected] Mary Tyler Kay Ave Clair 17876 St. Ohio 44110 Cleveland, Š Š Template provided by U.S. Department of Health and Human Services 26 July 2016 For more information, more For please visit hospicewr.org/about-us/Pages/Non-Discrimination-Policy.aspx origin, age, disability, can sex, or you file a grievance with: If you believe that Hospice of the Western Reserve that believe the Western of If you Hospice has failedto provide these services discriminated or in the another national basis on way race,of color, If you need these need If services, you contact 216.383.6688. color, nationalcolor, origin, age, disability, sex. or Reserve: Western Hospice of the Hospice of the Western Reserve the Western of does exclude Hospice not treat or people them differently becauseof race, discriminate the national basis on race, of color, origin, age, disability, sex. or English Reserve the Western of compliesHospice with applicable Federal civil rights laws and does not Non-Discrimination ​Non-Discrimination Statements REFERENCE presentar un reclamo a la siguiente persona: siguiente ala reclamo un presentar osexo, puede discapacidad edad, nacionalidad, color, étnico, por origen motivos de manera otra de olo discriminó no le proporcionó servicios estos que HospiceSi considera of Western the Reserve 216.383.6688 con comuníquese servicios, estos recibir Si necesita Hospice ofthe Western Reserve: o sexo. discapacidad edad, color,étnico, nacionalidad, debido origen asu diferente forma de trata las ni no personas excluyeof Western the Reserve alas osexo. Hospice discapacidad edad, nacionalidad, color, por raza, motivos de y no discrimina aplicables derechos de civiles leyes federales las con Hospice cumple of Western the Reserve Espanol (Spanish) 66

Š Š Š Š C aregiver TrainingGuide Š Š Š Š [email protected] 216.383.6688 Cleveland, OH44110 17876 StClair Ave Kay Tyler Mary Información escrita en otros idiomas. idiomas. en otros escrita Información capacitados. Intérpretes como siguientes: los el inglés, no es materna lengua cuya personas a gratuitos lingüísticos servicios Proporciona formatos). otros accesibles, electrónicos formatos audio, grande, (letra formatos en otros escrita Información capacitados. señas de lenguaje de Intérpretes como siguientes: los con nosotros, eficaz manera de comuniquen que se para con discapacidades personas las a gratuitos yservicios asistencia Proporciona

For more information, please visit hospicewr.org/about-us/Pages/Non-Discrimination-Policy.aspx hospicewr.org/about-us/Pages/Non-Discrimination-Policy.aspx visit please For more information, Independence Avenue, Room SW 509F, HHH 200 Services Human and of Health Department a continuación: U.S. que figuran números los opor teléfono a dirección siguiente ala postal gov/ocr/portal/lobby.jsf en disponible Portal, Complaint Rights Office de for Civil a través electrónica UU. manera de EE. de Humanos) yServicios Salud de (Departamento Services Human and Health of Department del Civiles) deDerechos (Oficina Rights Office forla Civil ante derechos de civiles reclamo un presentar También puede brindársela. para disposición a su Tyler Kay hacerlo, 216.383.6688 Mary para está ayuda Si necesita electrónico. ocorreo fax postal, opor correo en persona el reclamo presentar Puede ocr/office/file/index.html web en el sitio reclamo de 800.537.7697 obtener Puede formularios los (TDD) D.C. Washington, 800.368.1019, 20201 Building Translation provided by U.S. Department of Health and Human Services 26 July 2016 July 26 Services Human and Health of Department U.S. by provided Translation https://ocrportal.hhs. , o bien, por correo , obien, por correo http://www.hhs.gov/ .

If you do not speak English language assistance services, free of charge, 주의: 한국어를 사용하시는 경우, 언어 지원 서비스를 무료로 are available to you. Call 216.383.6688. 이용하실 수 있습니다. 216.383.6688 번으로 전화해 주십시오.

Hospice of the Western Reserve complies with applicable Federal civil Hospice of the Western Reserve 은(는) 관련 연방 공민권법을 준수하며 rights laws and does not discriminate on the basis of race, color, national 인종, 피부색, 출신 국가, 연령, 장애 또는 성별을 이유로 차별하지 origin, age, disability, or sex. 않습니다.

ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos UWAGA: Jeżeli mówisz po polsku, możesz skorzystać z bezpłatnej de asistencia lingüística. Llame al 216.383.6688. pomocy językowej. Zadzwoń pod numer 216.383.6688.

Hospice of the Western Reserve cumple con las leyes federales de Hospice of the Western Reserve postępuje zgodnie z obowiązującymi derechos civiles aplicables y no discrimina por motivos de raza, color, federalnymi prawami obywatelskimi i nie dopuszcza się dyskryminacji nacionalidad, edad, discapacidad o sexo. ze względu na rasę, kolor skóry, pochodzenie, wiek, niepełnosprawność bądź płeć. 注意：如果您使用繁體中文，您可以免費獲得語言援助服務。請致電 216.383.6688. ATENÇÃO: Se fala português, encontram-se disponíveis serviços linguísticos, grátis. Ligue para 216.383.6688. Hospice of the Western Reserve 遵守適用的聯邦民權法律規定，不因種 族、膚 色、民 族 血 統、年 齡、殘 障 或 性 別 而 歧 視 任 何 人。 Hospice of the Western Reserve cumpre as leis de direitos civis federais aplicáveis e não exerce discriminação com base na raça, cor, nacionalidade, idade, deficiência ou sexo. ةیوغللا ةدعاسملا تامدخ نإف ،ةغللا ركذا ثدحتت تنك اذإ :ةظوحلم -( مقر مقرب لصتا .ناجملاب كل رفاوتت ATENȚIE: Dacă vorbiți limba română, vă stau la dispoziție servicii de .asistență lingvistică, gratuit. Sunați la 216.383.6688 :مكبلاو مصلا فتاھ 216.383.6688-.

Hospice of the Western Reserve se conformează legilor Federale privind قرعلا ساسأ ىلع زیمی الو اھب لومعملا ةیلاردفلا ةیندملا قوقحلا نیناوقب drepturile civile și nu discriminează pe baza rasei, culorii, originii وأ نسلا وأ ينطولا لصألا مزتلی Hospice of the Western Reserve وأ نوللا وأ .naționale, vârstei, dizabilităților sau sexului .سنجلا وأ ةقاعإلا

AANDACHT: Als u nederlands spreekt, kunt u gratis gebruikmaken van ВНИМАНИЕ: Если вы говорите на русском языке, то вам доступны de taalkundige diensten. Bel 216.383.6688. бесплатные услуги перевода. Звоните 216.383.6688.

Hospice of the Western Reserve voldoet aan de geldende wettelijke Hospice of the Western Reserve соблюдает применимое федеральное bepalingen over burgerrechten en discrimineert niet op basis van ras, законодательство в области гражданских прав и не допускает huidskleur, afkomst, leeftijd, handicap of geslacht. дискриминации по признакам расы, цвета кожи, национальной принадлежности, возраста, инвалидности или пола. ATTENTION : Si vous parlez français, des services d’aide linguistique vous sont proposés gratuitement. Appelez le 216.383.6688. OBAVJEŠTENJE: Ako govorite srpsko-hrvatski, usluge jezičke pomoći dostupne su vam besplatno. Nazovite 216.383.6688. Hospice of the Western Reserve respecte les lois fédérales en vigueur relatives aux droits civiques et ne pratique aucune discrimination basée Hospice of the Western Reserve pridržava se važećih saveznih zakona o sur la race, la couleur de peau, l’origine nationale, l’âge, le sexe ou un građanskim pravima i ne pravi diskriminaciju po osnovu rase, boje kože, handicap. nacionalnog porijekla, godina starosti, invaliditeta ili pola.

ACHTUNG: Wenn Sie Deutsch sprechen, stehen Ihnen kostenlos DİKKAT: Eğer Türkçe konuşuyor iseniz, dil yardımı hizmetlerinden ücretsiz sprachliche Hilfsdienstleistungen zur Verfügung. Rufnummer: olarak yararlanabilirsiniz. 216.383.6688 irtibat numaralarını arayın. 216.383.6688. Hospice of the Western Reserve yürürlükteki Federal medeni haklar Hospice of the Western Reserve erfüllt geltenden bundesstaatliche yasalarına uygun hareket eder ve ırk, renk, ulusal köken, yaş, engellilik Menschenrechtsgesetze und lehnt jegliche Diskriminierung aufgrund von durumu ve cinsiyet ayrımcılığı yapmaz. Rasse, Hautfarbe, Herkunft, Alter, Behinderung oder Geschlecht ab.

CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí ATTENZIONE: In caso la lingua parlata sia l’italiano, sono disponibili dành cho bạn. Gọi số 216.383.6688. servizi di assistenza linguistica gratuiti. Chiamare il numero 216.383.6688. Hospice of the Western Reserve tuân thủ luật dân quyền hiện hành của Hospice of the Western Reserve è conforme a tutte le leggi federali Liên bang và không phân biệt đối xử dựa trên chủng tộc, màu da, nguồn vigenti in materia di diritti civili e non pone in essere discriminazioni gốc quốc gia, độ tuổi, khuyết tật, hoặc giới tính. sulla base di razza, colore, origine nazionale, età, disabilità o sesso.

AKIYESI: Bi o ba nsọ èdè Yorùbú ọfé ni iranlọwọ lori èdè wa fun yin o. Ẹ 注意事項：日本語を話される場合、無料の言語支援をご利用いただけ pe ẹrọ-ibanisọrọ yi 216.383.6688. ま す。216.383.6688まで、お電話にてご連絡ください。 Hospice of the Western Reserve tẹle ilana ofin ijọba apapọ lori etọ arailu Hospice of the Western Reserve は適用される連邦公民権法を遵守し、 ati pe wọn ko gbọdọ sojuṣaaju lori ọrọ ẹya, àwo, ilu-abinibi, ọjọ-ori, 人種、肌の色、出身国、年齢、障害または性別に基づく差別をいたしま abarapa tabi jijẹ ọkunrin tabi obinrin. せん。

For more information, please visit hospicewr.org/about-us/Pages/Non-Discrimination-Policy.aspx Template provided by U.S. Department of Health and Human Services 26 July 2016 hospicewr.org/caregiver-training 67 Notes

68 Caregiver Training Guide – INDICATES MEDICATIONS PROVIDED BY HWR. PATIENT NAME * PHYSICIAN NAME ALLERGIES: NURSE NAME PHARMACY NAME – RELATED UNRELATED * DAY/DATE ORDER DATE TIME MEDICATIONS COMMENTS DUE

BOWEL MOVEMENT

278-25 (4/11) White – Patient Copy • Canary – HWR Copy OUR MISSION Hospice of the Western Reserve provides palliative and end-of-life care, caregiver support, and bereavement services throughout Northern Ohio. In celebration of the individual worth of each life, we strive to relieve suffering, enhance comfort, promote quality of life, foster choice in end-of-life care, and support effective grieving.