CS247-CM Training Guide for Caregivers

Training Guide for Caregivers

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 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. Welcome WELCOME

THANK YOU FOR CHOOSING HOSPICE OF THE WESTERN RESERVE Each member of our paid and volunteer staff is 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 terminally 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 your healthcare choices are respected. They will provide physical assistance and medical care while supporting your emotional and spiritual wellbeing. 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. It delivers quick reference to practical information. We have included website links to training videos created specifically for the home caregiver. These may be particularly helpful. Our website, hospicewr.org, also has numerous other resources that were created to help make home caregiving easier and more enriching. We are available 24/7 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  Safety and Prevention...... 20 Hospice Care Team Members...... 5 Preventing Infection...... 20 FAQs about Hospice Care ...... 6 Respiratory Hygiene...... 20 On-Call Service...... 7 Influenza (Flu)...... 20 Hospice Care in Assisted Living Shingles...... 20 Communities & Nursing Centers...... 7 Blood-Borne Pathogens...... 21 Peaceful & Proud Veterans Care...... 8 Prevention of Bleeding...... 21 Western Reserve Navigator Preventing the Transport of Bed Bugs.....22 Palliative Care Services...... 8 Home Safety...... 22 Services at Hospice Inpatient Care Units...9 Emergency Response...... 23 Extended Care/Continuous Care...... 10 Emergency Medication Distribution...... 23 Patient Travel Information...... 10 Evacuation...... 23  Symptom Management...... 11 Sheltering in Place...... 24 Pain...... 12 Tornado Safety...... 24 Shortness of Breath...... 13  Providing Physical Assistance Anxiety...... 13 to Your Loved One...... 25 Restlessness...... 13 Ambulating with Your Loved One...... 25 Fatigue...... 13 Assistance Using a Bedpan...... 25 Helpful Relaxation Techniques...... 14 Assistance Out of a Bed to a Chair...... 26 Seizures...... 14 Caring for the Bedbound Patient...... 27 Mental Changes or Delirium...... 14 Assistance Using A Commode...... 27 Nausea and Vomiting...... 15 Giving a Bed Bath...... 28  The Role of Nutrition...... 16 Positioning Your Loved One...... 28 Difficulty Swallowing...... 16 Providing Mouth Care...... 29 Thickened Liquids...... 16 Pulling Up a Loved One in Bed...... 29 Decreased Appetite...... 16 Changing Bed Sheets...... 30 Mouth Care...... 16 Assistive Equipment Use...... 30 Caring for a Catheter...... 31  Medications...... 17 How to Make Medication Time Easier.... 17  Cardiopulmonary Care...... 32 Side Effects of Medications...... 17 Chronic Obstructive Medication Disposal...... 18 Pulmonary Disease (COPD)...... 32 Heart Failure...... 32  Oxygen...... 19 Symptoms and Interventions...... 32 Oxygen Safety...... 19 Oxygen Use...... 19 Oxygen Problems...... 19

2 Caregiver Training Guide  Dementia Care...... 34  Reference...... 54 Caring for Yourself...... 34 The Hospice Medicare Benefit and

Disease Progression...... 34 Other Insurance Coverage...... 54 TABLE CONTENTS OF Dementia Symptoms...... 35 Hospice Eligibility Explained...... 54 Communication...... 35 The Hospice Benefit Pain and Discomfort...... 36 Periods Explained...... 54 Sleeping...... 36 Medicaid...... 54 Eating...... 36 The Champs (TRICARE Insurance) Overeating...... 36 Program...... 54 Swallowing...... 37 Private Insurance...... 54 Interventions in Dementia Care...... 37 Financial Responsibilities...... 55 Communicating with Music/ Billing...... 55 Importance of Touch...... 38 Patient Responsibilities...... 56 Unique Grief and Loss Patient and Family Bill of Rights...... 56 for Dementia Caregivers...... 39 Grievance Procedures...... 56 Patient Privacy and Confidentiality...... 57  Caregiver Needs...... 40 Ethics Committee...... 58 Final Days...... 41 Non-discrimination Statements...... 59 Important Things to Attend to Español...... 60 When Someone Dies...... 43

 Grief and Loss...... 44

 Personal Planning...... 46 Advance Care Planning...... 46 The Living Will...... 46 Healthcare Power of Attorney...... 46 Do Not Resuscitate (DNR) Comfort Care Protocol...... 46 Organ and Tissue Donation...... 47 Memorial Planning...... 47 Personal Information and Records Checklist ...... 48 Memorial Worksheet...... 50 Memorial Planning...... 51 Probate...... 52 Financial Power of Attorney...... 52 VA Benefits...... 52 Giving Back...... 53

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

4 Caregiver Training Guide Hospice Care Team Members Specially qualified and trained team members provide hospice services. The individual receiving care and their caregivers are vital members of the care team. Together the team creates a plan that maintains individual dignity and ensures all physical, emotional and spiritual needs are taken care of.

A Primary Care Physician is responsible for A Dietitian provides suggestions on nutrition and INTRODUCTION continued medical management of your loved one’s symptom management. care. The Hospice Physician acts as a resource for hospice medical care and reviews the plan of care Overnight and Weekend Team Members assure on a regular basis. access to care 24 hours a day, seven days a week. Your loved one’s comfort and your comfort level as A Hospice Nurse visits on a regular basis to a caregiver are our priority. perform physical assessments, provide education and training about medications, care for physical A Bereavement Coordinator trained in needs and update the doctor. Your nurse is a supporting those who are grieving, offers valuable source of knowledge. supportive services to family members and significant others during the 13 months following a Your Social Worker helps you and your loved death. ones explore care options, finds other community resources and offers emotional support. Social Volunteer Service Managers help identify areas workers are available for individual and family in your life where a volunteer may offer assistance. support. Our social workers are dedicated to They discuss volunteers’ roles with patients and helping the patient and their family with the many their loved ones before asking a volunteer to join areas of life impacted by an illness. the team.

Hospice Nursing Assistants often have the most Volunteers are valuable members of your team frequent interactions with patients; they can be a and a great source of support. Volunteer staff great source of helpful information. Our nursing receive extensive education and are dedicated to assistants are experienced in hospice and palliative maintaining the patient’s privacy and dignity. care. Each holds the specialty certification, STNA, Volunteers can help in many ways: meaning they have additional training and have Š Providing a friendly visit or respite for a passed an exam administered by the State of Ohio. caregiver They offer important personal care and assistance Š Offering spiritual care support with bathing and dressing. They are also present Š Preserving life experiences through audio or for emotional support. video recording Spiritual Care Coordinators explore ways to find Š Bringing a pet to visit joy, meaning and purpose in life, even at the end of Š Assisting with occasional housekeeping and life. For those who have a religious faith, this may meal preparation include working closely with your spiritual advisor Š Providing simple legal assistance and faith community. Everyone can benefit from a Š Making periodic phone calls through check-in listening ear, guidance and willingness to explore programs to ensure patient needs are met universal questions, forgiveness and hope. Š Providing support to veterans through our Peaceful & Proud Program Art and music experiences by Therapists, Š Delivering comfort massage or Reiki Volunteers and other members of your hospice Š care team can enhance visits, provide symptom Providing support and presence in the time relief and allow opportunities for life review and surrounding death the creation of legacies. Š Helping fill a special request to bring fulfillment and comfort through the Moments to Remember The Staff Pharmacist strives to relieve pain and program (If your loved one has a special request manage other symptoms with minimal side effects or wish, please tell a team member.) and maximum benefit. hospicewr.org/caregiver-training 5 Frequently Asked Questions about Hospice Care

Q: What is hospice care? palliative medicine and nurse practitioners on A: Hospice is compassionate, comfort-oriented care staff. If you wish to change physicians or if the for the terminally ill with an emphasis on pain patient does not have a primary care physician management, symptom control and spiritual and and wishes for one of our hospice physicians or emotional support for the patient and family. A nurse practitioners to oversee care, please notify hospice physician certifies that a patient has a the hospice care team. prognosis of six months or less. Q: What if the patient moves during hospice Q: Where can hospice care be provided? care?

INTRODUCTION A: Care is provided anywhere a patient calls “home” A: A transfer to another Medicare-certified hospice such as a private home, group home, nursing or can be arranged by your hospice nurse. assisted living facility, one of our inpatient hospice care units (“hospice houses” - see page 9) or a Q: What if the patient no longer wants or hospital. needs hospice services? A: We will always honor the wishes of the patient or Q: How long can a patient receive hospice care? their designated representative for care. If services A: At admission, a physician certifies the disease has are no longer needed or desired, the patient must advanced to the point that the patient has months sign a discharge form. There are times when a rather than years to live if the illness runs its patient’s condition stabilizes; the hospice care expected course. Each week, the patient’s hospice team will discuss discharge. The patient may then care team re-evaluates and monitors if the patient’s join our Western Reserve Navigator program condition remains appropriate for hospice care. (see page 8) and a team member will call and visit Re-certification occurs at the three-month and periodically to check on the patient’s condition. six-month points and every two months thereafter. If you notice changes in the patient’s physical Sometimes, patients experience improved health health, do not hesitate to call us. Hospice services and do not need continuing hospice support. If will always be available when needed. their condition deteriorates later, they can be readmitted. Q: How does Hospice of the Western Reserve offer support to caregivers and other loved Q: Who pays for hospice care? ones? A: There are no out-of-pocket costs for any services or A: We provide support from clinical staff, personal medications related to the patient’s terminal illness. care for the patient, counseling, art and music Hospice of the Western Reserve is a Medicare/ experiences, spiritual care, pharmacy services and Medicaid certified hospice program, offering a more – all of which help caregivers return to the comprehensive Hospice Benefit. This benefit role of spouse, child, parent or friend. We offer covers the cost of all hospice care team services, caregiver respite if family members need a break medications and treatments related to the terminal from the stress of caregiving. Our social workers illness, medical supplies and durable medical can help navigate the complexities of terminal equipment. Many medical insurance companies illness. Our volunteer program is available to have similar plans that cover hospice services. create Moments to Remember for patients and families by helping them create memories and Q: Does the patient keep their own doctor? achieve special wishes. Our bereavement staff is A: Yes, hospice patients may continue to be served available to help loved ones manage their grief. by their own physicians. Hospice team members work with each physician, serving as a liaison between physician, patient and family. We also have physicians who are certified in hospice and

6 Caregiver Training Guide On-Call Service Hospice Care in Assisted Questions, concerns and problems often occur Living Communities & at night, on weekends and during holidays. We encourage caregivers to use our on-call service Nursing Centers when these needs arise. We want you to feel Assisted living communities and nursing centers confident calling for support. A team member is have become more common and popular. Many INTRODUCTION always available to speak with you to address your younger and healthier people are entering senior concerns and provide help. The Hospice of the communities with the intention of aging in place, Western Reserve office number will always work, even as their medical needs change. The medical 24/7, day and night. community refers to all these living environments as “alternative home” settings. They include: Please refer to the Communication Card on assisted living, nursing facilities, long-term care the back of this booklet for names and contact centers, group homes or other residential care numbers. Keep it in an easily located area in the settings. home. People living in long-term care settings may If you call for support after 4:30 p.m., or on receive hospice care. We have dedicated Hospice weekends and holidays, our answering service will of the Western Reserve teams that partner with promptly answer. The operator will request the alternative home staff to provide hospice care for patient’s name and the reason for your call. They individuals who live in these settings. We provide will then ask you to hang up and not to use your the same support and care for a resident there as we telephone while awaiting the call back. The on-call would for a person living in a private home. Even team member will be notified and will return your though your loved one is living in a facility, you call within 15 to 20 minutes. If your call is not are still a caregiver. Please refer to Page 4 to see returned in 15 to 20 minutes, please call again. ways our support can help you feel more confident If there is a change in the patient’s condition, and comfortable in this role. All of our services call Hospice of the Western Reserve first. If are included: expertise in pain and symptom someone has called 911, please notify Hospice of management, grief support, ongoing consultation the Western Reserve as soon as possible so we and access to our on-call hospice staff. By working can assist with care coordination. together, we enhance the residential facility’s excellent services. Provide the hospital registration clerk with the If the patient is eligible for a hospice benefit patient payment ID card you received from your through private insurance, supplies, equipment and hospice care team. medications needed as a result of the serious illness will be covered. The charge for room and board is not covered under the Medicare Hospice Benefit. If the patient is living at home, but expects to enter a long-term care facility, your hospice social worker will help locate a facility that works in collaboration with Hospice of the Western Reserve.

hospicewr.org/caregiver-training 7 INTRODUCTION living communities or in VA in or facilities. communities contracted living assisted and hospital centers, care hospice inpatient atour home, apatient’s in provided be can Hospice Honored Veteran pin. an with service military their We for veterans recognize dependents. and for veterans benefits and resources counseling, and care spiritual pairing, volunteer veteran veteran-to- art, and music using therapies expressive storytelling, wills, ethical with Veterans assisted are and substance abuse. anxiety regret, or remorse as such veterans, for issues emotional other and care trauma-informed in training the Western Reserve's receive paid unpaid and staff Proud & Peaceful the developed has Westernof the Reserve TO MEET THE SPECIAL NEEDS OF VETERANS ADDITIONAL SERVICES Personalized Care for Veterans Peaceful &Proud: 8

C aregiver TrainingGuide Peaceful & Proud, & program. Through Peaceful Hospice of of Hospice , Hospice , Hospice hours aday, 7days a week. You will have toll-free access to acaringnurse24 practitioners, social workers andtrained volunteers. Our Navigator Team iscomprised of nurse Durable Healthcare Power of Attorney. loved onesabouttopics such asLiving Wills and with difficult conversations between you and your challenges. Ourtrained volunteers andstaff canhelp Emotional supportissoimportantduringhealth programs such asMedicare, Medicaid andPassport. We canalsohelpfamiliescomplete paperwork for to helpyou avoid thehospitalasmuchpossible. physician to better managepainandsymptoms and prime goals. We work collaboratively with your and unnecessary hospitalizations isoneof Navigator’s Minimizing stressful andcostly emergency room visits that improve qualityof life. and assistingthefamilyinfindingadditional resources symptoms, supportingthemthroughout theirillness example. We focusonhelpingpatientsmanagetheir serious illness,diabetes as well asheartdisease,for Many Navigator patients have more thanone treatment andfurtherdiagnostictests. palliative care whilecontinuing to pursueaggressive hospice care, patientsmaychooseto receive diagnosed with aseriousoradvanced illness.Unlike may beappropriate forindividuals who have been family (CAPC.org 2011). Western Reserve Navigator improve qualityof lifeforboththepatientand illness – whatever thediagnosis. The goalisto with relief from thesymptoms andstress of aserious serious illnesses.It isfocusedonproviding patients is PALLIATIVE CARE Palliative Care Services Western Reserve Navigator specialized medicalcare forpeopleliving with , alsoknown aspalliative medicine, INTRODUCTION

9 hospicewr.org/caregiver-training Room andRoom board charges apply. This also access ones gives to a 24-hour loved care team to assist with direct care needs and the opportunity to focus their time being on present with the patient. Eligibility criteria to apply this program. Please ask to speak with a hospice team this feel member if you may to your apply situation. Home Away from Home in in Home from Away Home the Final Days Option When an illness brings a short life expectancy there may be a need (typically days), to 14 one a patient from hospital their or to move home inpatient our of hospice careto one units. This providesoption a comfortable, safe and peaceful final from in away the home patient’s home days. capacity family no or caregiving resources. Reserve the Western of isHospice committed Residentialto Care providing Short-Term (prognosis four to six of at our hospice weeks) inpatient care units a limited on basis based on bed availability. Eligibility criteria and and room board charges apply. this may only level be provided in contracted nursing facilities inpatient a hospice care or unit. Residential (Routine) Care (Routine) Residential Residential Care assistsShort-Term patients who are unable to care themselves, for limited have Room and board charges apply beginning on on beginning apply charges board and Room six. day admission. Anextension additional to five up of ofdays respite care in extenuating may be approved circumstances. In these situations, the patient must be transitioned to the of Level Routine andCare. board Room fees will any for apply days beginning the sixth on Extensions day. to Respite Care Respite A patient may be admitted Respite five of days for Care if their caregiver needs short a interval of rest from caregiver duties. The caregiver must intend to resume caregiving after the respite or requiringor that they be admitted to a contracted hospitalthe General for Inpatient Care.of Level While a patient remains in the GIP level of care, there are no room and board charges. In situations, some care needs a patient’s goals or caremay hospice lead to your team recommending Patients often return to the same residence once pain and symptoms are controlled optimally or managed. If this is an team not option, the hospice will assist in transitioning to an alternate care setting. Discharge plans must be discussed beginning at the time transfer/admission. of Anticipated day discharge of will be communicated once the effectivenessplanof the of care has been determined. In some situations, symptoms become managed than quicker anticipated. In those cases, the patient must be changed to the Level Routine Careof discharged. or At times,At admission to an inpatient care hospice unit may be necessary to address pain a patient’s other symptomsor that cannot be optimally or feasibly managed at their current location. This care care of hospice ends your level team when determines that pain other symptoms or are managed. optimally Pain and Symptom Management/ and Symptom Pain (GIP) Care of Level Inpatient General Your hospice care hospice team, in collaborationYour with your attending physician, will determine if a change in care of is level necessary. one’s loved your Levels of Care Provided at our Provided Care of Levels Units Care Inpatient Hospice For additionalFor information as such smoking policies, transportation, advanced directives and Do ResuscitateNot orders, medications, personal items to bring with insurance you, and billing, and room board charges and physician andnurse practitioner services, pleaseto refer our Guide to Amenities and Services. Inpatient Care Units Units Care Inpatient Reserve the Western of offersHospice threehome- like inpatient carehospice units (“hospice houses”). They all offer an array servicesof patients’meet to needs. ones’ and loved Services at Our Hospice Hospice at Our Services INTRODUCTION 12-hour shift. shift. 12-hour to eight an during breaks 10-minute up two to and break meal a30-minute allowed are members your home. in not Staff smoke while will and beverages food and own their bring will They times. all at respectful and courteous be your home will in and guests as conduct themselves will alert, and awake remain always will staff Our comfortable. and healthy keep to skin and for comfort frequently patients incontinent bathe/change and patients bound bed reposition We of care. plan the to will the patient’son updated response members staff other keep and visit the during given care the document electronically will your home, in staff our While volunteers. trained including service, this you receiving are while members staff you encounter different may team, by your hospice care visits regular to addition In receiving Extended Care? What can youexpect of us while symptoms. difficult active home. at It for managing is or caregivers team care for patient’s the asubstitute be to hospicenot meant is Care Extended hospice care. routine to return will patient the controlled, are Once symptoms patient’s residence. the in management symptom achieveto optimal no feasible it longer is if only recommended is This persist. symptoms the if units care hospiceour inpatient one to of may, atransfer recommend point, any at Your relief. symptom team hospice care optimal achieve to maintained level is ofappropriate care the that ensure will reassessment Ongoing term. short be to meant level is of care This intervention. nursing skilled additional without home patient’s the at managed be can than care skilled intense more require may that symptoms to-manage or hard- other of breath shortness nausea, pain, addresses alevel that is of care Care Continuous Continuous Care Extended Care/ 10

C aregiver TrainingGuide transferring hospice care. care. hospice transferring with assist we will care, inpatient requires and travel during changes patient’s the If status for you complete to forms appropriate provide and arrangements alternate make will They team. your hospice care inform please longer, for up 14 to staying If days. consecutive area service our outside travel supports policy Our hospicefor to your care. access arrange we –so can traveling to prior days business five least –at possible soon as as team hospice care your Hospice notify Please of Western the Reserve. with collaborate to willing are States United the hospices across Many area. service our outside travel to when needs apatient occasions be may There Patient TravelInformation care team. your primary with decisions these discuss Please etc. medications, refusing bed, in not turning as of your loved one, interests such best the in feel are You you welcome decisions always make to are needed. as often as and freely questions Ask managed. are symptoms current when their care for their planning in assist and team your hospice from care for visits available involved yourStay loved in one’s be Please care. the benefitsof Extended Care? What can youdoto maximize Symptom Management

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 For those that cannot report their own pain, look Pain is whatever the person says it is. Sometimes for signs like moaning, frowning, restlessness, tears pain can be worsened because of spiritual or or fast breathing. These can be signs of pain. emotional reasons. No matter the reason for the pain, your care team will work to identify what Helpful hints on managing pain: type of pain it is. Knowing why there is pain helps Š Use the medications as instructed find the right way to treat it. Š Do not increase or decrease medications without talking to your hospice care team Questions that will be asked: Š Apply hot or cold compresses Š Where is the pain? Š Use distraction: TV, music or a game might help until the medication works

SYMPTOM MANAGEMENT SYMPTOM Š How would you describe it? Stabbing? Sharp? Dull? Ache? Burning? Š Consult with your hospice care team about Š How often does the pain happen? developing a relaxation technique or guided Š How long does it last? imagery intervention Š What makes it better? Worse? Š Try guided imagery or meditation recordings Š Does it make certain activities hard or Š Use light touch or massage impossible to do? Š Can you rate it 0-10 or use a picture scale? ▸ Call your Hospice Care Team if: All medications have side effects. Some, like Š The pain is new or worse constipation, are normal and are easily treated with Š The medications no longer seem to work medications. Others, like sleepiness, may be normal Š There are side effects in the beginning, but may need changes. If there is a new symptom, notify your care team. They can develop a new plan to manage the pain and/or side effects.

WONG Baker FACES® Pain Scale

0-10 Numeric Pain Scale

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

12 Caregiver Training Guide Shortness of Breath/ Restlessness Breathing Difficulty Can’t rest, focus, concentrate, constantly moving SYMPTOM MANAGEMENT Š Open window or use a fan Almost half of people have this in the last 48 hours Š Raise head of bed of life Š Encourage slow calm breathing Š Use a soft voice Š Provide relaxing environment Š Provide reassurance Š Cool cloth to face Š Do not argue if confused Š Take prescribed medications Š Keep the patient safe from harm Š Use oxygen if prescribed Š Be present Š Use distraction ▸ Call if: Š Comfort Touch or massage Š It is a new symptom Š Give medications as ordered Š Interventions do not work Š Face/fingers become discolored or blue ▸ Call if: Š Fever is present Š Restlessness is new Š Moist productive cough Š Interventions are not working Š You have questions

Anxiety Fatigue Feeling afraid, nervous, worrying, irritable, unable Extreme exhaustion, increased sleeping, no desire to sleep to eat, not doing usual activities Š Provide calm, dimly lit quiet place to relax Š Plan rest periods Š Use prayer/meditation Š Plan activities when energy is the highest Š Provide distraction or use relaxing music Š Plan important and meaningful things first Š Use guided imagery/visualization Š Don’t plan multiple activities on the same Š Reiki, therapeutic touch, massage day Š Aromatherapy Š Use medical equipment Š Provide medications as directed Š Assist with bathing, dressing or household Š Be reassuring/present activities Š Ask for help. Say yes to friends and family May be caused by: Š Infection ▸ Call if: Š Inability to urinate We can provide Š Pain Š Nursing assistants Š Unrelieved symptoms Š Volunteers Š Respite stay outside of the home ▸ Call if: Š Equipment: hospital bed, wheelchair, bedside Š Anxiety is new commode, walker Š Unrelieved with interventions Š Help finding hired care Š Transportation

hospicewr.org/caregiver-training 13 Seizures Seizures look like twitches or tremors in the face and/or extremities. Seizures generally last less than a few minutes. Once a seizure has started, it cannot be stopped.

DO ; Stay calm ; Protect patient from injury – pad bed rails, remove sharp or hard objects near patient ; Turn head to the side if mouth secretions

SYMPTOM MANAGEMENT SYMPTOM are present ; Allow for rest after seizure has fully ended

DO NOT : Force anything between the patient’s teeth : Put fingers in the mouth : Hold down twitching extremities unless it is essential for personal safety ▸ Call your Hospice Care Team if: Š The seizure is a new occurrence, is unusual, Helpful Relaxation Techniques lasts longer than a few minutes or results in Everyone has their own way to relax. By following injury these simple steps for relaxation, your ability to manage stress and improve breathing will increase. Mental Changes or Delirium Š Personality changes, unexplained change in Š Find a place free of distraction and mood, confusion, not sleeping interruptions Š Dim the lights and turn off the television Š Speak slowly and clearly Š Silence phones Š Provide safe environment Š Turn on soothing music (optional) Š Attempt to tell them where they are or who Š Lie in bed or sit in a comfortable chair people are Š Lie or sit quietly, begin to focus on breathing. Š Do not argue with patient if they don’t understand Naturally, breathing will begin to slow down as you Š Explain what and why you are doing begin to focus on exhaling. As breathing slows, instruct the patient to let the weight of their body something sink into the chair or bed. Ask them to imagine a favorite place, moving around in this place and ▸ Call your Hospice Care Team if: noticing all the colors, sounds and smells of the Š Symptoms are new surroundings. Š Interventions are not working Encourage them to enjoy this place and the relaxing feeling it engenders. Movement is free, and breathing is easy. Allow the patient to continue to relax and enjoy the music. It is okay for the patient to fall asleep. When they are ready to return from this place, gently instruct them to slowly move fingers and toes and return to an upright position.

14 Caregiver Training Guide Nausea and Vomiting Your loved one may experience nausea and vomiting for a number of reasons: starting a new pain medicine, an infection, anxiety or a change in their illness. Call your hospice nurse if nausea or vomiting SYMPTOM MANAGEMENT begins; there is medicine to help. The patient should not stop taking the pain medicine without speaking to the hospice nurse first.

Helpful hints to combat nausea ▸ Call if: and vomiting: Š Nausea or vomiting is new Š Avoid heavy meals, dairy products, fatty foods Š Continues after interventions or medicine and strong smells Š Associated with pain Š Avoid excessive activity and lying down after Š Vomit has blood or is black eating Š Do not force someone to eat Š Maintain a quiet area with good air flow Š Give clear liquids: sips of water, ginger ale, peppermint tea, ice chips, popsicles Š Provide mouth care: brush teeth, clean dentures Š Wait two hours after vomiting to give more fluids Š Give a bland diet if no vomiting for 24 hours: toast, crackers Š Give medications as instructed by the hospice team

Notes

hospicewr.org/caregiver-training 15 The Role of Nutrition It is normal for those who are terminally 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 throughout the day; three to six light meals or smaller portions are usually better tolerated than traditional meal sizes. Offer fluid 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.

Difficulty Swallowing Decreased appetite Š Start the meal with a clean mouth NUTRITION Things to do: Š Rinse with mouthwash between meals Š Position patient close to a sitting position Š Sip on mint-flavored water, tea or ginger Š Change the thickness of the fluid ale Š Give soft, easy to chew food Š Eat meals together Š Chop or puree difficult to chew food Š Provide choices in food Š Soften food with a thin liquid, sauce or gravy Š Keep snacks available Things to avoid: Š Metallic taste can be improved with gum, Š Avoid dry or crumbly food: crackers, chips, mints, lemon drops pretzels Š Try sweetening foods Š Avoid seeds or foods with small pieces: rice, Š Room temperature or cold foods have less nuts, popcorn, beans smell and may be easier to eat Š Raw vegetables or hard fruit Š Avoid use of metal; it can leave a metallic taste Thickened Liquids Š Try frozen fruits like bananas, grapes, Š Blend fruit and juice to a thickness like syrup strawberries Š Use pudding, yogurt, baby cereal to add calories and thicken liquids Tips for providing mouth care: Š Use commercial thickeners: your hospice Š Clean the mouth with toothpaste and soft care team will demonstrate how to use these toothbrush or toothettes Š Use diluted mouthwash for mouth freshness Š Use hard candy, ice chips, popsicles, frequent sips of water to treat dry mouth Š Spray the mouth with a mister filled with cool water to treat dry mouth (a mixture of 1 tsp. of baking soda in 8 oz. of water)

16 Caregiver Training Guide Medications

Medications: DO: How to Make Medication Time Easier for ; Tell your team if you have only 3-4 days of Patient and Caregiver a medicine left To make swallowing pills easier, moisten mouth ; Keep all medication away from children and with water or add pills to applesauce or pudding. pets Some pills may be cut in half. MEDICATIONS ; Give medicine exactly how it was ordered ; Record when and how much of an “as Š If giving a medication rectally, it is best needed” or “PRN” is given to administer after a bowel movement if ; Inform your hospice care team of any possible. Using a glove, lubricate one finger vitamins, herbal medications or over-the- and insert the medication at least 2/3 of the counter medications you take or begin finger’s length. taking Š When using liquid medicine, slightly tilt ; Inform your hospice care team if a head upright and slowly pour the medicine medication is added or changed by someone down the side of the mouth. other than the hospice team Š When administering medication under the tongue or between the cheek and gum, Medications: DO NOT: moisten the area with two to five drops of : Change a medication dose or stop taking water and then place the pills in that area as a medication without telling your hospice directed by your hospice care nurse. care team : Give medication to anyone other than the patient Side Effects of Medications : Crush a medicine unless told to by your Š Sleepiness: Can last for 1-3 days. The body hospice care team will usually adjust : Give more than what has been ordered Š Constipation (no bowel movement or small hard stools): increase liquids if possible; OPIOIDS AND SEDATIVE DRUGS are commonly medication may be started routinely or if used to control symptoms in patients at the end needed to help of life. Many of the medications used to treat Š Diarrhea/loose stools: do not take pain and symptoms have an effect on the central medication to stop it unless your hospice care nervous system and may cause drowsiness or team instructs sleepiness. Examples are morphine for pain or shortness of breath, Haldol for nausea or vomiting Š Some side effects will decrease or go away and Ativan for anxiety. Š Some symptoms may be a result of changes in the illness Many times the drowsiness will stop after the person’s systems gets used to the medicine. Many ▸ Call your Hospice Care Team if: patients receiving new medications or with severe Š Itching, rash or hives occur illness will nap or drop off to sleep normally during Š Patient has upset stomach or is vomiting the course of a day because they have reduced Š Side effects last longer than expected energy due to their disease, and not necessarily Š Side effects are causing distress due to any medications. Patients do rest and Š Patient is feeling too sleepy, less aware sleep more as the disease progresses. If you are concerned about the drowsiness or sedative side effects, please let your hospice team know of your concern. If the patient desires to be more alert, changes in the medication can be made.

hospicewr.org/caregiver-training 17 MEDICATIONS Medication Disposal: How to notified. be will authorities local disposal, facilitate Hospice nurse of Western the Reserve or have of medications dispose to refuses afamily If record. medical electronic the into entered be will medications destroy to or refusal the disposal of performance education, the of Documentation of death. time the at particularly medications, of disposal witness will Anurse ongoing. and on admission of medications on disposal the instructed be patient’sThe will family/caregiver Home Care medication. destroy to arefusal is there if police the hospice the inform to requires law This of death. time the at stopped and is medication when date, expiration the when past it person is by another unusable made be must A medication medications. other and substances of controlled or dispose and/ supervise and facilitate to of death time the at responsibility take Hospice will of Western the Reserve of care. plan patient’s the in included transdisciplinary were opioids that containing substances controlled remaining of any type and enforcement quantity the law local to report notice, Hospice will of Western the Reserve of opioids/medications written despite dispose to refuses (9) family (B) 3712.062 the of section if Under Code, division Revised of Ohio the 3712.062 Section (9) Code (B) Revised Ohio Medication Disposal 18

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19 hospicewr.org/caregiver-training Call immediately if stops equipment working If electricity stops goes equipment or out working, use the cylinders provided and care contact hospice your team immediately to determine a plan Call care hospice your team have if you questions or problems Replace tubingReplace at least every 3 months or if it becomes kinked Place tubing prongs curved down side and wrap behind ears gauzeUse wrapped around tubing for soreness onlyUse at prescribed level If nose becomes too dry use NON- jellypetroleum-based gel like K-Y nasal passagesaround

Š Š Š Š Š Š Š Š Oxygen Use ProblemsOxygen Smoke or use or e-cigarettesSmoke any or vaping device in the building extensionUse cords surge or protectors hairUse other aerosol spray sprays or when oxygen is in use petroleum-basedUse products Store tanks in the trunk a car of Keep inKeep place with good air flow from away flamesKeep or any objects lit Smoking" "No Post signs at entryways intoPlug a grounded outlet Store unused tanks their from on away side fire sources detectors smoke floor each on Have a fireHave extinguisher home in the

Š Š Š Š Š Š Š : : : : : Many items that would not normally burn in normal air will ignite when increased oxygen oxygen increased when ignite air will normal in burn normally not would that items Many This environment. an oxygen-enriched creates it used, is oxygen are When present. levels furniture, bedding, as such items household everyday which at temperature the lowers and burn. hair ignite human and even clothing Smoking while using oxygen can cause facial burns, property facial People and death. damage cause can oxygen using while Smoking ones, caregivers, neighbors and pets. loved themselves, to a threat pose smoke who DO NOT Oxygen Safety Oxygen The use oxygen of is determined the doctor by nurse and hospice and must be used as instructed. The 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 tanks and oxygen concentrators. 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 with liquid soap and warm water for a full count of to person by droplets in the air when the infected 15–20 seconds. Be sure to wash your entire hand person coughs, sneezes or talks. Symptoms develop to above the wrist, between fingers and under 1–4 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

SAFETY & PREVENTION & SAFETY at the bedside for use when a sink isn’t close to the How to Prevent the Flu patient care area. Apply a small amount to palm It is important that caregivers and family members of your hand and rub hands together, covering all get a flu shot in October or November. Some surfaces of hands and fingers until dry. patients have weak immune systems and are unable to respond to the flu vaccine and so they are very susceptible to the flu. It takes 2–3 weeks for the Wash your hands before and after: body to build antibodies to the vaccine and protect Š Giving care to the patient you from the flu. The flu shot lasts approximately Š Using gloves 12 months and must be repeated every year. Š Using the bathroom Š Eating or smoking Š Before preparing meals Shingles Shingles is caused by the same virus that causes Š Having contact with any body fluids chicken pox. After recovering from chicken pox, Š Playing 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 Š Returning home from being out affects the immune system. The virus, when Š Having contact with someone who is ill reactivated, causes shingles. Š Coughing or sneezing Symptoms of shingles include a tingling feeling Respiratory Hygiene on one side of the body which starts itching and Respiratory hygiene/cough etiquette are measures then becomes a rash. Fluid-filled blisters then designed to limit the transmission of respiratory develop from the rash. These fluid-filled blisters are infections by droplets in the air. contagious to caregivers or family members who Š Cover your mouth and nose with a tissue have not had chicken pox. When these blisters dry Š Put your used tissue in the waste basket and crust over (in about 3–5 weeks) they are no Š Or, cough and sneeze into your upper sleeve, longer contagious. Visitors and anyone caring for not your hands the patient who has not had chicken pox should Š Wash your hands with soap and water or wait until the patient is no longer contagious before clean with an alcohol-based cleaner visiting. Check with your doctor immediately.

20 Caregiver Training Guide Blood-borne Pathogens Prevention of Bleeding There are diseases that cause a risk to caregivers Patients may be more likely to bleed because of the such as Hepatitis B and C and AIDS. Hepatitis B effects of their illness or medications. Talk with a SAFETY &PREVENTION and C are viruses that cause serious liver disease hospice nurse if any unusual bleeding occurs. and are spread through exposure to blood and other body fluids. AIDS affects the immune Helpful Hints system. It is spread through blood and semen. Š Avoid using sharp objects (knives/scissors/ There is no vaccine for AIDS. Use precautions and razors) use latex condoms to prevent the spread through Š Be careful not to bump into your loved one sexual contact. while you are caring for them Š Use an electric shaver not a manual razor Helpful Hints Š Drink warm fluids and/or eat fruit to help Š Use disposable gloves when in contact with reduce the likelihood of constipation, which the patient’s body fluids (blood, urine, stool, can cause bleeding (See Side Effects of wound drainage) Medications, page 17) Š Remove gloves and dispose of in trash Š Use a soft toothbrush, sponge, or toothette to immediately after use. Place trash soiled with prevent gums from bleeding; avoid flossing blood or body fluids in a leak-proof plastic Š Blow nose gently bag and place in trash container Š Clean up body fluid spills as soon as possible ▸ Call your Hospice Care Team for: Š Use a 10% bleach and water solution to clean Š Blood in urine, stool, sputum or vomit up body fluid spills (1 oz. bleach and 10 oz. Š Bloody nose (several episodes or one that is water). This solution is good for 24 hours not easy to control) only. A fresh solution needs to be made Š Multiple bruises daily; use household disinfectants appropriate Š Many small, reddish-purple spots under skin to surface being cleaned Š Bleeding - apply moderate pressure to the Š Air out room when possible area if possible and call your hospice care Š Place needles, syringes, razors and other team sharp objects in a plastic red container – keep sharps and the red container out of the reach of children Š Do not share personal care items Š Instruct visitors to wash hands before and after visiting with patient. Request “no visiting” if visitor has a cold or does not feel well Š If the primary caregiver or other family member is ill, the best choice would be to relieve the caregiver of duties until they are well again. If this isn’t possible, use good hand washing, gloves and a disposable surgical mask to protect the patient Š Request advice from your hospice care team about vaccines and other precautions

hospicewr.org/caregiver-training 21 Preventing the Transport Home Safety of Bed Bugs Electrical Bed bugs have increasingly become a nuisance Place electrical cords from medical equipment throughout the United States. Please tell your (bed, oxygen concentrator, etc.) and extension hospice care team if you know or suspect there are cords out of walkways to prevent tripping or bed bugs present where the patient lives. This will falling. Check extension cords often to make sure help them to use safety procedures to prevent their they are in good repair. Extension cords should transport outside of the home or facility. not be overloaded. It is a safer choice to use power When the care team visits a home or facility where strips (surge protectors) or outlet adapters. Keep bed bugs are suspected or known they are required unused electrical equipment unplugged and place SAFETY & PREVENTION & SAFETY to wear protective shoe covers and coveralls. safety covers in unused electrical outlets. Store and Your hospice care team will only bring supplies use electrical appliances away from water. or equipment they need for the visit. These will need to be placed on hard surfaces such as a table, Walkways chairs without fabric upholstery or similar pieces Remove as many rugs, runners and mats as possible of furniture. Any equipment or supplies that your from areas used by the patient. Secure all loose hospice care team takes with them from the home rugs with double sided tape or rubber matting to or facility will be sealed in a plastic bag before they prevent falling. Replace or repair torn or frayed leave. rugs. Keep carpets tacked down. Keep stairs and halls clear and well lit, with well-secured rails on When a patient must be moved from a home or both sides. Patients should wear shoes with tread facility with known or suspected bed bugs to a and avoid using the stairs wearing only socks, loose hospice inpatient care unit, hospital, nursing home, slippers or smooth-soled shoes. assisted living or other location, the hospice care team will bathe the patient and place them in a Outdoor entryways should be well lit and clear of clean gown provided by your hospice care team. debris, ice, leaves and snow. Provide secure outside The receiving facility will be notified of the reason step and porch railings. The house address should for transfer. be clearly visible from the street during the day and night to guide your hospice care team and other In this situation, patients and family members are visitors. not permitted to bring any personal items such as purses, bags, clothing, luggage, hygiene kits, etc. Any of the patient's medications taken with Pet Control them will be placed in a sealed plastic bag. Family For the safety of your hospice care team and your members are asked to inspect their clothing prior family pets, we ask that you contain any pets to accompanying the patient. The hospice care prior to team members entering the home. Care team will notify the transportation company, team members have the right to request that pets funeral home and any other agency or service that be contained and to refuse to enter the home if will have personnel or equipment coming into they are not. In the event that a team member is the home that there is a possible or confirmed bitten by a family pet, Hospice of the Western infestation. Reserve is obligated to report the bite to the health commissioner of the district in which the bite occurred. Please see codes.ohio.gov/oac/3701-3- 28v1 for more information.

22 Caregiver Training Guide Bathroom Emergency Response Install grab bars and non-skid mats in showers, The agency conducts and participates in periodic tubs and toilet areas to help with transferring the emergency preparedness drills in order to test the SAFETY &PREVENTION patient. Always check the water temperature for the agency’s and community’s emergency response patient before a bath or shower. plans. Team members will communicate with you in the unlikely event that these could affect you. Telephone In the event of an actual emergency, including Be certain that all cell and cordless phones natural and man-made disasters, life-threatening are charged and place hospice care team and situations or utility failures, please contact 911. emergency phone numbers in easy-to-find places Please notify the agency as soon as feasible. Follow near phones. Keep a phone near the patient’s bed or the directions of the community emergency chair, within easy reach. If your loved one is alone response system from the radio or TV. for all or part of the day, ask a friend, neighbor or other family member to make periodic calls, or Team members will be assigned to contact patients consider an emergency monitoring device. and families in affected emergency areas to assist with emergency response. Please contact the Fire Safety agency to assist in the event that the patient and/ There should be at least one smoke detector for or caregiver must be moved or evacuated from each level of the home. Develop an evacuation their location or are transported to a hospital or plan that includes evacuating those who need help emergency shelter. to walk or who are bedbound. Make a secondary escape plan in case the primary plan cannot be Emergency Medication Distribution carried out. Include family members, neighbors The agency, in cooperation and mutual agreement and/or friends to assist in evacuation if necessary. with health departments throughout Northeast Be certain to communicate your evacuation plans Ohio, is authorized to serve as a closed point of to everyone involved. distribution of medications needed to counteract a health threat in the event of a man-made or Clear all pathways and keep all exits open and natural disaster. Medications and health department unblocked. If you have a deadbolt, keep the key educational materials would be distributed to near the door and let everyone in the household patients and their household members by team know where to find it. Do not leave fireplaces and members and volunteers. This would eliminate the space heaters unattended while in use. Fireplaces need to access community points of medication should have screens or doors which are kept closed. distribution. Heaters should have screens or an automatic shutoff device. Kerosene heaters require good room ventilation. Never smoke or have open flames in Evacuation your home if oxygen is being used or stored. Keep Have an evacuation and backup plan ready. fire extinguishers within reach at home and replace Determine where the patient may be moved them before their expiration date. 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 the agency if the patient and/or caregiver need to change locations.

hospicewr.org/caregiver-training 23 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 communities for a few days or possibly longer. require the patient or caregiver to change locations, County and city health departments, emergency please notify the agency. management departments, Homeland Security and Ready.gov all offer guidance on how to prepare for Power Outage these situations. Having a terminally ill household If the patient uses a medical device or equipment member makes these preparations even more that requires an electrical source, switch to the important. We encourage you to access these sites backup energy source, if this does not occur in order to develop and implement emergency automatically. If the patient uses an oxygen SAFETY & PREVENTION & SAFETY plans that meet your particular household situation. concentrator switch to the back-up tanks (see Plans may include emergency kits, alerts, family oxygen on page 19). Unplug appliances and reunification and communications. equipment until after the power has been restored. Contact the agency if the patient needs to change Some items to consider: location or to notify the oxygen supplier for Š Food and water supplies: 3-5-day supply additional oxygen. If a crisis occurs, call 911. of water (1 gallon per person per day) and unrefrigerated, ready-to-eat foods Gas Leak Š Medications, patient care supplies and If you know or suspect a natural gas leak leave personal care supplies the area immediately and go to a safe location. Š Light sources (flashlight, extra batteries) Natural gas has a “rotten egg” smell. Do not do Š Battery operated radio or TV anything that could cause a spark or ignite the gas Š First aid kit such as using electrical devices (telephones, light Š Warm clothing/blankets/sleeping bags switches, garage door openers, e-cigarettes, etc.); Š Cash in small denominations using open flames (matches, lighters, cooking, Š Identification, bank account and insurance candles, fireplaces) or starting vehicles. Contact policies in a waterproof container the gas company. Inform the local police and fire Š Matches in a waterproof container departments. Do not re-enter the building until the Š Plastic plates, cups and utensils gas company has given the approval. Contact the Š Household chlorine and a medicine dropper agency if the patient or caregiver need to change locations. Tornado Safety A Tornado Watch means that local weather Water Outage/Shortage conditions exist for a tornado to develop. A If a water outage or shortage occurs, use Tornado Warning means that a tornado has been emergency bottled water or purchase bottled water. sighted and you should take shelter. Remain calm. Follow advisories, notices and directions for using If possible, move the patient to a basement. If you or boiling water. Restrict the use of available water do not have a basement, move to the lowest level of for drinking. Contact the agency if the patient or the building in an interior room without windows, caregiver need to change locations. a hallway away from windows or doors or any protected area away from windows or doors. If a patient cannot be moved from their room or to a lower level, they should be moved towards an inner wall and covered with blankets. Drapes and blinds should be closed to reduce the risk of flying glass.

24 Caregiver Training Guide 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. PHYSICAL ASSISTANCE 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 will be happy to assist you.

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

hospicewr.org/caregiver-training 25 PHYSICAL ASSISTANCE PHYSICAL 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 4. Bring the person to a sitting position on the the side of the bed or hold on to a walker, side of the bed. wheelchair or arms of a 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 they feel time for the blood to circulate to avoid light the surface of the chair behind their knees. headedness as someone changes position. 13. Have the person reach both hands backwards 6. Place appropriate footwear on the person’s to the arms of the chair or continue to hold feet to offer stability. the caregiver's waist. 7. Face the person and place your right foot 14. Bend your legs to help lower the person as between the person’s feet. they slowly sit. 8. Bend your knees to ensure you are assisting 15. Gently guide the person by their waist to sit. the person using your legs and not your back.

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 their 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.

26 Caregiver Training Guide PHYSICAL ASSISTANCE

Caring for a Bedbound Patient Assistance Using a Commode 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 standing 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.

hospicewr.org/caregiver-training 27 Giving a Bed Bath Positioning Your Loved One PHYSICAL ASSISTANCE PHYSICAL 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 drying of will be turning toward. the skin). Cover each cleaned area with a 3. Raise the bed to the top of your hips to avoid towel or blanket before moving to the next bending over the person - bending over area. A common strategy is to start with the could cause back strain which you always extremities and wash the trunk last. want to avoid. 4. Consider changing the water halfway 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 your loved one and between the knees and ankles to offer reposition them every two hours to prevent additional comfort and prevent bone resting pressure sores. on bone while lying on their side. 9. Place a pillow behind the back for support and to hold the side-lying position Skin Care 10. There should not be any weight on the Keeping the skin moisturized and clean with shoulder or knees. Be sure to keep bony frequent position changes (every two hours) is prominences protected. important during illness. If the skin is very dry, use 11. Raise the head of the bed to about 20 moisturizing soaps and lotions. degrees for comfort.

28 Caregiver Training Guide PHYSICAL ASSISTANCE

Providing Mouth Care Pulling Up a Loved One in Bed 1. Gather the following supplies for mouth *This is a two-person task care: soft toothbrush, toothpaste, cup of water, dish to spit into. Additional items 1. If using a hospital bed, start by lowering the such as K-Y jelly to moisturize lips (Vaseline side rails. should never be used with oxygen because it 2. Raise the bed to the top of your hips to avoid is flammable); 1 tsp of baking soda in 8 oz. bending over the person - bending over water can help with dry mouth. could cause back strain which you always want to 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. Rinse mouth and dentures after meals. 4. Stand between the person's hip and shoulder 5. Remove dentures before bed. of the person and grab and role the draw 6. Notify your hospice care team if you notice white patches on the person’s gums, tongue sheet with palms facing down. Be sure the or throat. Also notify the hospice care team draw sheet is between the person's nipple line if the person is having difficulty swallowing. and mid-thigh. 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 of 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 their 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 lie on.

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

hospicewr.org/caregiver-training 29 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 2. Raise the bed to the top of your hips to avoid and shower seats, etc. bending over the person - bending over Š Assistive equipment should not be used alone could cause back strain to your back which until the patient has been shown how to use you always want to avoid. it properly. 3. Lower the head of the bed so that the person Š If the patient is unsteady, a walker or cane is lying flat. should not be used without some assistance 4. Stand between the person's hip and shoulder; during walking. this is where you will grab the draw sheet to Š Equipment can be cleaned using soap and

PHYSICAL ASSISTANCE PHYSICAL move the person on to their side. water and towel dried before subsequent use. 5. Ask the person to reach and grab the bed Š A pad or pillowcase on the wheelchair seat rail - if they are able - while you gently will also help keep it clean. guide them onto their side. Š Make 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 equipment. the person’s arm out of the way to avoid Š Remove all throw rugs to reduce the risk of shoulder discomfort while the person is lying falling. on their side. 7. Begin to change the sheets by rolling the used sheets (including the fitted sheet) under ▸ Call your Hospice Care Team if: the person along the length of their body. Š The patient has fallen 8. Attach the top and bottom corners of the Š The equipment is cracked or broken clean fitted sheet and flat sheet. Smooth the Š There are any questions about the proper use clean sheet out under the patient. of the equipment 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 bedbound. 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

30 Caregiver Training Guide Caring for a Catheter A catheter is a tube inserted into the bladder to help drain urine. It has a small balloon that is blown up to keep the tube from falling back out. A catheter may be needed due to increased weakness, loss of bladder control, etc. If a catheter becomes needed, the hospice nurse will place it and show the caregiver how to PHYSICAL ASSISTANCE care for it.

Helpful Hints ▸ Call your Hospice Care Team if: Š Wash your hands before and after handling Š The catheter is not draining the catheter. Š The urine has an odor or change in color Š Check the tubing periodically to see if urine Š The patient spikes a fever is draining. Š Be sure that the tubing is not kinked or bent Š Change the drainage bag weekly, as the Hands-On Caregiver Training nurse will demonstrate. Hospice Nursing Assistants (HNAs) are Š Empty the drainage bag 1–2 times per day; available to provide instruction/training to empty leg bags every 3-4 hours. prepare families and caregivers to provide safe Š Keep the drainage bag below the level of the personal care. Examples of the training they bladder at all times. can provide: Š Do not pull or tug on the catheter or tubing Š Cleanse the tubing with soap and water daily Š Transfer techniques and when the tubing gets soiled. Š Incontinence care Š Be sure to begin where the tubing enters the Š Skin care/bathing body and work away. Š Mouth care Š If the patient is pulling on the catheter, Š Safety put on a pair of adult briefs to hold it more Contact your hospice care team if you securely in place, keeping it from moving. are interested in having a training visit. Š When turning the patient from side-to-side, Instructional videos are available at move the drainage bag from side-to-side. hospicewr.org/caregiver-training to assist Š Irrigate the catheter if the nurse has caregivers. instructed you to do so.

Notes

hospicewr.org/caregiver-training 31 Cardiopulmonary Care Chronic Obstructive Pulmonary Disease (COPD) COPD is the result of lung problems that have developed over a period of many years. It is often associated with severe asthma, chronic bronchitis, or emphysema. Airflow through the lungs has been hindered by inflammation and/or excess mucus, tightening of muscles around the airways, or by collapse of the airways. Heart Failure (HF) When the heart’s pumping ability has become too weak to completely empty its chambers, fluid may back up in the lungs making it very difficult to breathe. Fluid can collect in other body parts as well, causing swelling and discomfort. CARDIOPULMONARY CARE CARDIOPULMONARY

Fatigue Managing Shortness of Fatigue is a common symptom of COPD and HF. Breath with Medication It can be difficult for patients to perform everyday Your hospice care team might suggest medicine to tasks such as walking short distances (i.e., down help relieve shortness of breath. Research shows your driveway or around the house) or sitting up opioids (e.g., morphine) can help reduce exhaustion at the dinner table. Your hospice care team will and relieve the feeling of breathlessness. Your suggest ways to help conserve energy. hospice care team will help explain the use of any medications. A fan may also help lessen the feelings Though rest is helpful, so is exercise. Research of shortness of breath. shows that using large muscle groups in low intensity exercise can increase energy. Patients who ▸ Call your Hospice Care Team if: are able should take short walks several times a day Š Increased shortness of breath when it best suits them. If they are unable to walk, Š Increased use of an inhaler or nebulizer they can enjoy other physical activities like knitting Š Excessive fatigue or painting. Your hospice care team can suggest Š Increased mucus secretions ideas for physical activities for those who cannot Š Change in color of secretions get out of bed. Š Fever Š Weight gain of two or more pounds in one Breathing Techniques day There are two breathing techniques that help Š Waking during the night unable to breath patients in end-stage cardiopulmonary disease take Š Pain in chest, arms, neck, jaw, or back, not in more oxygen-rich air. In the first technique, relieved by current medications inhale slowly through the nose for two counts, Relaxation then pucker lips as if blowing out a candle and Relaxation may be useful to cope with the physical exhale slowly through the mouth. and mental stress of COPD and HF. In the second technique, sit in a comfortable Your hospice care team can provide assistance in position with hands resting on the abdomen. relaxation techniques. Some general examples can Inhale slowly through the nose, feeling the stomach be found on page 14. muscles relax. The chest does not rise. Then, tighten the stomach muscles and exhale slowly through pursed lips.

32 Caregiver Training Guide Spirituality and Patients with COPD/HF Exploring spirituality can be helpful emotionally and further enhance relaxation. A Spiritual Care CARDIOPULMONARY CARE Coordinator from your hospice care team will contact you to offer a visit. Patients are encouraged to meet the Spiritual Care Coordinator. They may be helpful in discussing fears, regrets and hopes.

Consider the following: Phone Support: A Call to Connect Š What gives you hope? Hospice of the Western Reserve’s cardiopulmonary Š What gives you peace? phone support team is comprised of volunteers Š What provides meaning and purpose in your who make weekend phone calls to patients with life? a cardio or pulmonary diagnosis who reside in a private residence. Caregivers of patients living Suggestions: in nursing facilities and interested in receiving Š Talk about accomplishments or regrets. weekend phone calls from a volunteer should let Š Think about past coping skills. their hospice care team know. Calls are made once Š Utilize support systems of friends, family, during the weekend and accommodate the patient’s church or synagogue. schedule. We encourage patients and caregivers to Š Engage in complementary/integrative use these calls to discuss any difficulties they may therapies, such as art, music, massage. be experiencing. Š Meditate or use guided imagery. Š Identify sources of inspiration and personal A Call to Connect is a simple yet effective service growth/satisfaction. that keeps the patient and caregiver connected with Š Keep a journal. their hospice care team. It provides support and Š Arrange for pastoral care/supportive presence. monitoring of symptoms and reminds the family Š Pray, read scripture or sacred texts. that their hospice care team is available.

Notes

hospicewr.org/caregiver-training 33 DEMENTIA CARE Cognitive dementia. of stages late below indicate may behaviors and symptoms of abilities, loss The patient’s health. the and overall of dementia type the including factors on many depend progression its and of dementia course The Disease Progression 40). on page Needs (see Caregiver 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 34

Š Š Š Š C aregiver TrainingGuide

Behavioral changes communicate to ability Impaired disorientation and confusion Profound remember to ability the in decline Progressive Complications Nutritional Functional Š Š Š Š Š Š Š Š

incontinence incontinence and immobility to related breakdown Skin incontinence bladder and Bowel infections tract urinary pneumonia, such as Frequent infections, 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 DEMENTIA CARE

35 hospicewr.org/caregiver-training Look directly approaching one, loved at your them from the front. to get a gentleUse attention touch and provide a physical connection. as the patient may sudden movement Avoid startle easily. using one their loved Greet your first name. short,Use simple words and sentences, try or gestures explain. to help clearly do and but Speak deliberately, slowly, talknot to them like a child.

Š Š Š Š Š Š What Can Be Done Be 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 quizzingwants 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 get back. what – not you Non-verbal means of communication become increasingly important as the ability to use words diminishes.and convey Body language, and ongoing, contactgentle eye promote touch sensitive communication. Adopting ways of new communication will maintain help the personal relationship and dignity the person for with dementia. Keep theKeep area quiet with distractions. few Make what of note triggers the behavior and try it. to avoid throw rugsRemove and electrical cords that could cause tripping. Install childproof latchesdoorknobs. or “Bathroom,” signsPost rooms for (e.g., patient recognize to help “Kitchen”) location. carKeep sight. of keys out identificationKeep on patient at the all times. numbers,(name, contact phone address) rearrange not Do furniture as this may add to the patient’s confusion.

Š Š Š Š Š Š Š Š Creating a Calm Environment Environment a Calm Creating Wandering an may of be as not issue much earlier ason is it in late-stage may notice dementia. You the person pacing walking or aimlessly as a result of confusion, restlessness or boredom. For some, it is communicating of a way fears needs. or Make sure the person is getting the right amount rest, of food and drink. Provide reassurance one that loved your is safe. to wander Allow one in areas loved your that are well lit and secure and take a walk together. People withPeople dementia sometimes become anxious agitated.or scream, may Some even hit push. or to take not Try the aggressive behavior personally. Instead, stay calm and use a soft, reassuring tone. Redirect engaging by in a relaxing activity, such as art care Contact music. or hospice your team for more individualized suggestions. Each personwith dementia experiences unique changes is in important It behavior. that to note while the changes can be upsetting, the person is not acting this purpose. on way There are underlying reasons as such pain illness, or noisy environment with over-stimulation or unfamiliar/unrecognizable surroundings. maybe frustrated one loved Your because communication is difficult or becausethey an complete activitycan’t that used to be simple. Any changes in behavior should be discussed with care hospice your team so that a comprehensive assessment can be done. Dementia Symptoms Dementia Challenges Behavior Dementia Care Eating Š Give one-step directions. Often a person with dementia experiences changes Š Ask questions one at a time. Patiently wait in appetite or ability to eat. While these new eating for a response, give extra time to respond. habits can be distressing for the caregiver, there are Š Accept silence. They may not talk as much as several reasons for these changes: loss of interest, before. inability to chew or swallow, inability to recognize Š Eliminate background noise and distractions. the need to eat, depression, or forgetting how to Š Maintain eye contact at eye level, for feed oneself can affect their eating. Talk to your example when they are sitting, sit also. hospice care team about well-balanced meals. You Š Smiling helps to gain and keep attention. may be able replace meals with high-calorie snacks.

DEMENTIA CARE DEMENTIA Pain and Discomfort Suggestions: Pain can go unrecognized and untreated if the Š Reduce the size of helpings or offer finger person is not able to express degrees of pain or foods. other symptoms. Part of the comprehensive pain Š Alter the flavor of foods since tastes may have assessment is the PAINAD tool. A member of your changed. hospice care team will use it during each visit to Š Chop or puree food to ease chewing and determine their level of pain. Simple measures such swallowing. as repositioning or applying a warm compress can Š Avoid exposure to large groups of people help alleviate discomfort. during mealtime. Š Offer one food at a time with the correct Medications may be required to improve the level utensil to avoid confusion. of comfort. Overeating Sleeping In some instances, the person cannot sense fullness Sleep problems are part of normal aging and can or differentiate nutritious foods from foods that are be more severe with dementia. Some people with less healthy. They may not understand the timing dementia experience “sundowning,” which is of meals, or the differences between breakfast, characterized by increased agitation, restlessness lunch, dinner and snacks, or may be unable to and confusion at dusk and through the night. recall when they last ate. In this case, it is better to This can make it difficult for them to get the sleep limit access to snacks, especially sugary ones, which needed to function well during the day. have a negative effect on the individual’s mobility.

Suggestions: Suggestions: Š Limit intake of alcohol and caffeine. Š Provide alternatives that satisfy a sweet tooth Š Plan days with interesting activities and but are lower in calories, such as sugar-free increased exposure to daylight. Jell-O and pudding, cookies containing Š Establish consistently scheduled times for dried fruit and/or nuts, low sugar candies. getting up and going to bed. Š Introduce stimulating activities throughout Š Limit daytime napping. the day that help keep focus away from food Š Establish a bedtime routine. and eating. Š Avoid activities that might be upsetting or Š Maintain a consistent meal schedule. cause agitation near bedtime. Š Look for snacks the individual may have Š Stay calm if your loved one wakes in the hidden. middle of the night.

36 Caregiver Training Guide Swallowing Interventions in Dementia Care Difficulties in eating can be the result of physical Feeding Tube conditions and an indication that dementia is in late Sometimes the placement of a feeding tube is stage. Dysphagia (trouble managing oral secretions considered. Studies have shown that artificial or drooling), weakness of a voluntary cough nutrition and hydration do not improve comfort, or swallow and involuntary tongue thrusts are DEMENTIA CARE functional status or quality of life for people with common. You may notice changes such as frequent dementia. This is an individual choice for each throat clearing, poor oral hygiene, weight loss, family, and your hospice care team will respect dehydration or voice quality/tone. your wishes. During mealtimes, the person may experience Not surprisingly, caregivers are often concerned the uncoordinated chewing or swallowing, multiple person on a feeding tube is experiencing hunger. swallows for each mouthful, pocketing of food However, other patients at the end of life who are in the cheeks, or coughing or sneezing during/ able to communicate say they experience little or following eating. If the patient experiences pain or no hunger or thirst. Mouth swabs or ice chips can discomfort in the throat or chest when swallowing alleviate what little discomfort they might feel. or has a sensation of food/liquid “sticking” in the throat, something special may have to be done with the head or neck to ease swallowing. In Medications such cases, eating may be so strenuous as to cause After review of all current medications, new fatigue, changes in respiratory patterns, hoarseness medicines may be ordered, depending on the stage or reflux. Talk with your hospice care team if you of the dementia. In general, medications meant to feel swallowing has become challenging. slow the advancement of Alzheimer’s dementia are no longer appropriate during the end stages of the Suggestions: illness when the focus of care is on comfort. All medications will be discussed with the caregiver(s) Š Keep eating and speaking separate to avoid by the hospice care team. choking. Š Avoid lengthy mealtimes which contribute to See Medication on page 17 for more information fatigue. or ask your hospice care team. Š Do not leave your loved one alone while eating. Creative Caregiving For more tips and suggestions, see Nutrition on Before beginning any personal care for the person, page 16. such as bathing, consider any sensitivity and try to accommodate it. Think about how and when the person with dementia prefers to wash. For instance, is your loved one a late riser? Does your loved one prefer to wash before bed? Have the room ready, warm and free of drafts. Begin in the least sensitive area of the body, such as hands and arms. Wash hair last or at a separate time. Give them something to hold like a sponge ball and play soothing music or sing familiar songs.

hospicewr.org/caregiver-training 37 Connecting with Music The Importance of Touch Music is very effective in easing the stresses of For a person with dementia, touch can be a way of dementia. The rhythm, pitch and melody can connecting and avoiding a feeling of isolation. A stimulate different parts of the brain. It can soothe gentle touch provides a feeling of acceptance and an agitated person, relieve anxiety and decrease a sense of well-being. This improved emotional pain. It provides a means of reminiscence and experience reduces fatigue, anxiety, depression and can bring a sense of belonging and spirituality. tension. Use gentle touch when you need to get Furthermore, music helps a person with dementia their attention. express themselves. By singing or playing a familiar song, you may notice changes in facial Suggestions: expression, increased eye contact, vocal activity and Š Be clear about your intention, telling them DEMENTIA CARE DEMENTIA movement. exactly what you are going to do. Š Massage over clothing, which may be more Suggestions: comfortable for people with neuropathology. Š Sing or hum a familiar song, such as “Take Š Do not require them to move positions. Me Out to the Ball Game” while completing Š Avoid areas of skin with irritation or personal care like bathing or changing the inflammation. sheets. Š Keep in mind that skin may be fragile and Š During meal times, play familiar recorded sensitive. music with a relaxed tempo. Š Rock or move gently to their favorite music, for example, big band or classical music. Š Listen to music from concerts they attended and tell stories about it. Š Play quiet music at bedtime.

Please Note: Listening to music may conjure both positive and negative memories and feelings. If certain types of music cause agitation, try another song or stop the music altogether.

Notes

38 Caregiver Training Guide Spirituality and People with Dementia Unique Grief and Loss for Spirituality is a connection to a higher sense of self Dementia Caregivers and purpose in life. It is expressed in our beliefs, Feelings of grief and loss can occur at any time actions, faith and relationships with God or a when caring for a person with dementia – not higher power, self, others and creation. For people just in the final stages. You may feel angry with end-stage dementia, the emotional aspects of about the disease, saddened that you struggle to DEMENTIA CARE spirituality are more meaningful, as they connect communicate, or depressed that your loved one is with the heart rather than the intellect. Re-affirm no longer the person you knew. Focusing on the that life is precious, love is available and joy in the person now, versus the loss of memory or abilities, present moment is possible. may help lessen the grief that you are experiencing. When the end is near, caregivers deal with what Suggestions: is referred to as anticipatory grief – the reality that Š Stimulate the senses especially through death is inevitable. Previously, the end seemed to scents, visuals and textures. be far in the future, but changes in the last few Š Play videos of scenes of nature with soft months have made the end of the journey closer. calming sounds. There is no right or wrong way to grieve, no Š Read familiar prayers, poems, stories, calendar and no magic solutions. Feelings of grief Scripture passages and blessings. are very powerful and often misunderstood. It is Š View TV programs of religious/spiritual physically and emotionally draining and operates nature. on a timeline all its own. You may experience Š Listen to music or sing religious hymns. physical, emotional, intellectual, behavioral and Š Make religious or cultural rituals or services spiritual reactions. available. Š Give the patient a spiritual symbol to hold Talking about the grief you are experiencing Š Provide an exercise in guided imagery or sometimes requires help from a professional. Your meditation. hospice care team is available to provide support. Š Get help from your local religious figure of your faith. Hospice of the Western Reserve offers bereavement Š Celebrate religious/cultural holidays that are services that provide support, encouragement, a family tradition. education and resources for 13 months following the death of your loved one.

hospicewr.org/caregiver-training 39 CAREGIVER NEEDS Here are some valuable suggestions: person, youneedto care foryourself. To effectively care foranother overwhelming. Pleasebeaware of: Caregiving responsibilities can feel that yousay.to need things with lovedyour one,saying business closesome to unfinished time You intimate. find may become more may emotionally your relationship together; your time in laughter You of self-worth. sense or astronger peace your loved of and inner sense moments of and onejoy find may together. You memories positive and feel a may 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 terminally for anyonea is who cares you Acaregiver acaregiver, are. you not yourself consider may Although Caregiver Needs - We Are Here for You 40

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negative comments comments negative on not dwell to try 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 care team. care team. over your hospice these with talk Please started. help to you some ideas Here are get care. receiving person the and of yourself care taking toward step first the is acaregiver as your needs Identifying exercise. and properly eat rest, enough Get Maintaining goodhealth isapriority. What worries you? What worries about providing care? What questionsdoyouhave help with? have What would youlike to 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 Š Š Š Š Š Š Š Š Š Š

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41 such as side may become is caused by with arms, chest hospicewr.org/caregiver-training to side. relaxed vocal cords and a small amount oralof secretions collecting in of the back the throat. The patient any does feel not discomfort from this be and may even not Elevatingaware it. of the the head bed of or turning the patient their on will side usually quiet the breathing sounds. or faceor in the last minutes few life of are a part process. shutdown These the body’s of are to be considered not seizures seizure or activity. Seizure-like movements Seizure-like occurs movement Unusual eye the in amount Incontinence/decrease color urine urine/darker of breathing Moist-sounding a problem. Your nurse nursing hospice or Your a problem. assistant obtain can you help pads to place under the patient for more comfort and cleanliness.

Š Š Š Š and you cannot is a result is common. The difficultyswallowing becausethe body functions are gradually slowing down. The may drymouth become and will to need be moist. The patient willkept experience not hunger. see are common and necessarily not frightening and can be comforting to the patient. of a changeof metabolism. in the body’s time more toTry spend with the patient during those times greatest of awareness/ wakefulness. Visions of people and things things and people of Visions Restlessness confusion or Sleeping/difficult to arouse to Sleeping/difficult Decreased need for food and drink, and food for need Decreased patient may become increasingly confused 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. the Keep rails side of their safety. for bed up

Call Your Hospice Care Team for: Team Care Hospice Your Call Š Š Š Š

 ▸ As the patient prepares the final for stageof physicalnoticeyou life,may changes taking Not place. allof these signs will appear at the same time appear and may some at all. never Please us see let know what you care hospice teamand will experience. Your identify you help thesechanges and through support you this difficultundertakenYouhave preciousthe most service time. by It is ourone. caring desireloved to for a be present with and the patient during you the last care hospice team days and will hours. Your coordinate this supportive you. for presence Signs and Symptoms of Approaching Death Approaching of Signs and Symptoms There may be differences how familyin members and friends respond. Some may privatewish to have time may Some with wish one. care their to hospice providepersonal loved team will care. Your support you do what feels right you and help you. for From 1–3 months before death, it is common for a person’s world to focus inward. world There months death, is before a shift is a person’s it common for From 1–3 away from social more the outer This world. is a withdrawal not to a need focus from but energy you, love of is presence very important.inward. Your Final Days Days Final life journey is unique, toward death. andEveryone’s sois This everyone’s is a difficult you because time may know what not to expect during finalcareYourhospice team the patient’s willdays. everything do 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 prepared, is it natural but confused to feel and upset. Be kind and gentle to yourself. CAREGIVER NEEDS Notes 42

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apnea), may occur in the final stages of life. life. of stages apnea), final the in occur may (called of no breathing second10-30 periods 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 Change in breathing patterns breathing in Change Cooler body temperature Hearing and vision are doing to them. to you doing what patient the are to Explain diminish. to of senses the last the be to thought is hearing hear, since can patient the that Assume room. the on in light soft may change. Keep some change. may may cause the the cause may , including hospice care team for support. team hospice care Use your needs. caregiving with for assistance Ask friends. and Include family time. this during Try not alone be to 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 of know any let team yourPlease hospice care Š Š

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43 hospicewr.org/caregiver-training 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 deceased by Creditors money owed cards,(credit mortgage automobile company, loan agency) Social SecurityAdministration to determine areif eligible you benefits for The deceased’s bank to handle financial matters accounts; joint determine (roll over if deceased had a safe a or deposit box bank security and appropriate box follow procedures) Human Resources at the deceased’s place (if employment working)of they were to therediscover 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

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 online 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: following: the Contact 10-15 copies of the death of copies certificate10-15 Social Securitycard Marriage certificate Birth certificate Insurance policies Deed and titles to property Stocks, bonds IRAs and/or Bank books dischargeHonorable papers veterans for and/ claim number VA or titleAutomobile and registration papers Loan and installment payment books and contracts. Family Funeral Home Physician Attorney

Š Š Š Š Š Š Š Š Š Š Š Š Š Š Š Important Things to Attend to When Someone Dies Someone When to Attend to Things Important Often death when occurs, expected even death, the sadness can be overwhelming and interfere with the ability to take care important of matters that must be attended may toin think, a timely manner. You “Where do I begin?” and at a loss feel to start the process. Havinga checklist be more you may help efficientand thorough. Although this list not is exhaustive, it highlights important tasks needthat to be taken care and of when. Obtain the following documents: After the Funeral the Funeral After Determine needs a home to be not or whether secured If is the homeowner empty. if is it now deceased, with check their insurance company regarding any changes in coverage. Hospice of the Western Reserve the Western of – if careHospice a hospice team member is present at death, should not you call immediately: Immediately Immediately Notify necessary care hospice parties. teamis Your available make to calls. help these phone GRIEF AND LOSS Suggestions to Promote Healing at 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 to continue hospiceThe will bereavement team one. loved of a death the you feel after may sadness deep the for prepared however, no way fully be is to there grief, Even anticipatory with grief”. “anticipatory as known of grief you encounter feelings may ill, for someone terminally who is of caring course the During timetable. own on way their own and their in differently, grieves person Each grieve. to way or wrong no right is There responses. spiritual and behavior, intellectual social, involves physical, that of emotions coaster It aroller is loss. any to reaction natural necessary, anormal, is Grief Grief andLoss 44

hospicewr.org/grief. Š Š Š Š Š Š Š Š Š Š Š Š C aregiver TrainingGuide

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

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. fewer but coping with adults, to similarly reacting to dying and death of about specifics the curiosity aconcrete way amorbid 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, old children of 3-5-year- 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 process. this help with who can coordinators, bereavement our Child or access to Grieving the to Guide for Parents our team your hospiceAsk care of feeling. how are they understanding a better get to questions You children ask need to may 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 grief later. Children's years or months until itself not manifest may grief the Also, big feelings. these let manage, alone identify, However, to ways. unable unique often are they own their in grieve will children adults, Like GrieveChildren Too GRIEF AND LOSS

45

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 after the death. You may have 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. 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. or decreasedor appetite. Forgetfulness and inability to concentrate concentrate to inability and Forgetfulness Guilt and regret Guilt and Relief Sleeplessness appetite in Changes the death. You may constant your be relieved of the death. You worries, responsibilities your caregiving, of your or suffering. one loved This normalis a part of the grief process. second-guess ourselves. You maybe 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 You may a deep longing feel your for You Not only Not will there be times sad; feel you Shock and numbness Shock are typical grief Anger the intense of is one emotions that is reactions. You may as feel are if or autopilot on you reactions. You just going through the takes motions. It the mind time to grasp that death has occurred. you may experience sadness.you of waves These waves are often unexpected and overwhelming and can bring tears. loved one. It takes It one. timeloved the to reality accept the of loss may findandyourself you searchingyour for might think You hear or one. their you voice loved sense their presence. Notes Anger Sadness Longing Longing Common Grief Reactions Reactions Grief Common Shock a part the normal of grief reaction. everyone Not may be angryfeels anger, many but You do. at the person died, who responsible, yourself, the people the situation God. or 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 behalf on their decisions healthcare make to advocate an name to aperson allows that A document Healthcare Power of Attorney at or online team your hospice care from 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 or visit for member acopy team ahospice care Ask forms. donation tissue and power of attorney healthcare will, Ohio’s and living information resources, in Ohio choices healthcare and your care in of Conversation: goals Communicating Courage titled booklet, all-inclusive This forms. these with assist to guide afree access Please time. any at changed be choices. can They healthcare own their 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 healthcare for future way plan to no easy is There Advance Care Planning Personal Planning org/decisions 46

C aregiver TrainingGuide hospicewr.org/decisions . , includes decision making making decision , includes . hospicewr. CPR. 911 start call and we will arrest, DNR-CC and not have does apatient a If arrest. acardiac has who individual an support to ability our in limited we are therefore, medications; or equipment resuscitative donot maintain Units Hospice Care met. The are your wishes that ensure to important very is unit hopsice care inpatient the in while care of of apatient’s goals discussion Ongoing of care. meet your goals can that ahospital to transferred 911 have call them and we will resuscitated, be to desire of their because not them able be support to we and would patient’sthe worsening, is condition that indicates team’s your hospiceIf care assessment necessary. be may On-call, Administrator the including others, with Consultation admission. Team to prior Leader Clinical Unit Hospice Care by the obtained be must approval and review place, aDNR-CC NOT order is in When continue. will care comfort but stops) (breathing arrest stops) or apulmonary (heart arrest acardiac is there that time the until care medical aDNR-CCWith order, receives standard aperson life. sustain saveto or measure but resuscitative no suffering, and pain eases that care receives any a person order, (DNR-CC) 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) PERSONAL PLANNING

47 Special hospicewr.org/caregiver-training Consider using pictures, Consider Reflectivepassages of sacred text, Music affectsour feelings and the poems, and short stories are all helpful in remembering are the person celebrating. you faithSome traditions may require scripture be read, many but faiths are flexible and will other typesinclude readings of as well. Readings life of Symbols meditation eulogy, Homily, Music atmosphere in remember our which loved we Select hymns,one. songs other music that or favorites, bring one’s comfortare loved your their celebrate or life. items from a person’s hobbies, avocations, hobbies, items from a person’s important moments in life, symbols of accomplishments or milestones achieved. thoughts and reflections help us integrate the readings,music, and symbols with the loved life and indicatesone’s ways the departed inspired us.

Š Š Š Š Things to Remember: Remember: Things to Hospice of the Western Reserve’s Spiritual Reserve’s the Western of Hospice Care Coordinators can assist in planning you a memorial and are one service also loved your for available to conduct a memorial service. In most cases planning a memorial service falls to the immediate survivors. is also It the common for patient to participate in this planning. If the patient has an reached understanding and acceptance about their finalon momentsearth, planning memorial a service jointly can be very meaningful both of for you. The Memorial Service: A A Service: The Memorial Life of Celebration A memorial service provides a sense completion of both thefor deceased and the survivors. the Despite grief and fatigue, spending time with friends and 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 think their about values, special work, events, life’s travelshobbies, and contributions. will It you help withcope grief. your Memorial Planning Planning Memorial If you would like would If information you more organ about and tissue donation, please ask a team member and arrangements will be made further for discussion. The Gift of Life: Organ and Tissue Donation Donation Tissue and Organ Life: of Gift The Organ and tissue donationsare the giftlife. of Through donations, such the lives others of canbe realize We improved. or prolonged, saved that this is a difficult decision to especiallymake, a at when time are experiencingyou intense grief, many but families later have said that their pain and loss was somewhat eased having by given a gift is an life one of organ If loved to another. your tissue please or inform donor, care hospice your team so these arrangements can be made you. for PERSONAL PLANNING  Phone Address   legal documents. review you or help to prepare Westernthe Reserve Volunteer document. in the named through available are others of Hospice and family share itand attorneys with members it one. you time this you you at If If prepare encourage to it awill, we awill, good do do not have is have idea review to Attorney 

  LOCATION Personal Information andRecords Checklist  Phone Address 48

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

______and/or (group individual) insurance Life

______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

49 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., Receipts for furs, jewelry, etc. etc. jewelry, furs, for Receipts cards Credit Business records Military discharge papers Military papers discharge Contracts Automobile titles Automobile Marriage/divorce certificates Marriage/divorce Birth certificate card security Social Returns for the years past several Safe deposit box box deposit Safe Checking account Checking Savings account Savings Brokerage firm/broker Brokerage Stocks, bonds, certificates of deposit Mortgages, records, or mortgageMortgages, or records,

  

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

 Personal Information and Records Checklist Checklist and Records Information Personal LOCATION

  Address Phone     payments information  PERSONAL PLANNING Charity of choice______Charity Military service/recognition achievements/honors Major Organizations/offices affiliation Church/religious Major/area employer______no. of yrs. ______loved other of and spouse ones_ Names Occupation ______from area the to Came 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 placing for responsible who is director funeral the to forwarded be then can completed The form information. complete gather and talk, and of your loved think, to death done the to prior one, time when is there best is help to way you possible. This any in We advance. done be in can willing are 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 aterminal with of dealing stages many in families our Supporting Memorial Worksheet Birthplace 50

C _ aregiver TrainingGuide ______

_ State ______When ______Zip Code ______

PERSONAL PLANNING

51 hospicewr.org/caregiver-training ______Body donation organization Contact number Contact number Organ donor organization Specific instructions ______Cemetery name number and plot ______Telephone Funeral home Funeral director Address If you have made have funeralIf you arrangements wish or to use the services a specific of funeral director, record that information here: Also, the purchase an of Irrevocable Burial Contract is considered a legitimate down to spend liquid way assets if qualifying Medicaid. for Speak with social spiritual hospice or your worker care coordinator if you assistanceneed with funeral planning. Memorial Planning Memorial manyFor patients and families,pre-planning the funeral offers an control of comfort.amount and It 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 your of home to arrangechoice a meeting. The funeral director home can also assist withan Irrevocable Burial Contract. This is a preplanned and prepaid funeral. Along with mind, peace of preplanned funerals and may also price.secure a lower PERSONAL PLANNING Notes you need avolunteer attorney. if team your hospice contact for care 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 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 52

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.). determination confusion, to This due 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 We with you consult to assets. advise their of proper the distribution involved ensure to becomes Court Probate dies, Once aperson 800.750.0750 Ohio Relay Service (TTY) 800.750.0750 (TTY) Relay Ohio Service 216.698.2600 44115 Ohio Cleveland, 1849 Avenue, Prospect E#150 Veterans Service Commission Wars:Veterans of 216.522.3510 Foreign 800.827.1000 assistance: and information Benefits 44114 10th Ohio Floor, Cleveland, Street, 9th 1240 East Office Regional Cleveland of VeteransDepartment Affairs Government States United 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 for burial assistance financial be may There Medicaid Recipients PERSONAL PLANNING

53 hospicewr.org/caregiver-training Third Party Fundraisers Party Third goodDo while having fun with friends, your service religious civic group, club, organization, or Organizecompany. a putt-putt golf outing. a Hold to need you bowling provide the help We’ll event. 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 families need,variety a offer and we of volunteer opportunities for individuals and groups. groceries. up Pick Feed a pet. You a story. Read oftendecide and how want in to what you way Detailshelp. are available at hospice.org/volunteer. with Us Walk the annualEach June, attracts to Remember Walk thanmore 2,000 friends the Western of Hospice of Reserve gather who to life celebrate and to Details ones. remember their loved are available at hospicewr.org/wtr. Honor your loved one by placing by one an loved your inscribedHonor brick or instone any our of three memorial gardens - Ames Family David House, Hospice and House, Simpson the Medina Hospice Inpatient Care Other tribute Center. garden options include dedicating a granite personalized bench with a name sentiment or and planting a tribute tree. Visit hospicewr.org/tributes for options. Inscribe a Memorial Brick or Granite Brick or Granite a Memorial Inscribe Tribute What wish do you philanthropic your legacy to wish you other Perhaps families tobe? help as you Consider been helped. have the future and make Reserve the Western of a beneficiaryHospice of willyour life or insurance policy transfer or a gift directly from IRA. your Please us let your know of intentions can so we support wishes. your Create an Estate Plan an Estate Create In Lieu of Flowers, Request Donations Request Flowers, Lieu of In Reserve the Western of and Hospice Include obituary. You one’s in loved your hospicewr.org will their memoryhonor withlasting a gesture that others,helps while thanking the caregivers who through you helped a difficult time. Giving Back Back Giving Families and friends often can ask, thank we “How services?” your for you giving By help back, you ensure that compassionate care will be available to other families in need. Donations any of size are Giftsalways welcome. directly support patient care and family services.And there are many additional, meaningful ways to give back. What a wonderful,lasting to carry way the memoryon love. those of we 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 or if improving is patient the If ill. terminally 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. terminal 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 terminally the to related equipment and 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 54

Š Š Š Š Š C aregiver TrainingGuide

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 theterminal have confirmed director Patient’s hospice the and medical doctor A Part Medicare Patient has making a trip to the hospital. hospital. the to atrip making before or night day team your hospice care Call room. emergency the including illness, terminal the to related stay hospital of any preauthorization the requires Benefit Hospice Medicare The arrange transportation. help will members team hospice the care needed, out of home such is by If a hospice atrip nurse. assessed be must need for The this necessary. be may units care hospice inpatient one three ofin our 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 you have any questions. you havequestions. any or coverage if your to healthcare changes any with worker or social nurse your primary contact Please coverage. the regarding company insurance the contact We will program. their within coverage have hospice carriers insurance private Most 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 REFERENCE

55 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? The patient immediate or family will be billed anyfor amount applied toward their personal co-pay afterdeductible and/or the partial payment has from been received the insurance 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 also request a financial assessment to determine eligibility payment for plans and other financialoptions. hospice A care team socialcan provide more worker information and to our Financial connect you Ser vices Team.

Billing Q: A:

Deductibles and co-payments Care and treatment no providedwhen insurance coverage is available Care and treatment related not to the serious illness 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 facilityphysician and/or contracted not with Reserve the Western of Hospice Medications underMedicare covered not Part D Ambulance transport prior to hospice admisisons is authorized not the hospice by teamcare

Š Š Š Š Š Š Š Š Notes Financial Responsibilities Financial understandI (we) that costs which are approved not Reserve the Western of and in Hospice not by compliance with the agreed plan upon care of may include the following: 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 56

Š Š Š Š Š Š Š Š Š Š C aregiver TrainingGuide

than 911, for immediate assistance. 911, assistance. than for immediate Hospice rather of Western the Reserve, Call symptoms. or condition of change Team) questions, any with On-call the hours, after (if team hospice the care Call Teamthe Leader. of assistance the with scheduled be will visits Subsequent immediately. home leave the 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 Team The contacted be may team. Leader hospice the care 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. team hospice care 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

problem to: problem refer the to you have right time, the At any at Officer 216.383.3730. Clinical Chief the call your to satisfaction, addressed not been has your concern/complaintIf still hours. 48 within concern your to respond 216.486.6007 who will at Officer Quality Chief the or write Call 216.255.9071. by calling call On- You Administrator the contact also may nurse. on-call the when calling call On- Supervisor the request evening, the in weekend the or during occurs concern this If Teamthe Leader. way. not call this resolved, your is concern If resolved be will concerns Most team. care your hospiceTalk over with your concerns 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

57 hospicewr.org/caregiver-training To have electronic have access to the agency’s To Privacy of Notice Practices via the website the organization’s of copy a paper receive To Privacy of Notice Practices request upon request restrictionsTo the uses on and disclosures health of information confidential request to receive To communication access their protected healthTo 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. hospicewr.org/privacy

Š Š Š Š Š Š Š Š HIPAA hotline voicemail: 216.383.6688 Compliance and Privacy Compliance CHPCA CNP, MSN, Tyler, Mary Kay Chief Quality Officer Compliance Officer and Privacy Inc. Reserve, Western Hospice of the Avenue Clair 17876 St. Ohio 44110 Cleveland, 216.383.3745 or 216.486.6007 Phone: [email protected] Email: 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 Hospice of the Western Reserve’s Compliance Reserve’s the Western of Hospice Hotlinevoicemail is in box use place staff, for by independentcontractors, patients and families seven Individualsdays 24 hours a week, a day. a can leave confidentialmessage Chieffor the Quality Officer if aware an they of become alleged wrongdoing ifor any they have concerns regarding unethical illegalor involving at, or by conduct the agency. Individuals will their be asked name to leave so ifthey can necessary. be contacted follow-up, for anonymous messagesHowever, will also be accepted. Only the Compliance (Chief Officer Quality Officer) accesshas totheCompliance Hotline voicemail box. Anyone canAnyone report concerns regarding a lack of compliance in person, writing, by via voicemail, e-mail calling by or the Compliance Hotline voicemail 216.383.6688. at box In concert with our mission,the of Hospice ReserveWestern operates in an ethical and conscientious manner, adhering to laws and regulations in providing care hospice and services to the communities serve. we The agency will toleratefraud, no wasteabuse or in conducting our businessin or delivering services to our patients and families. the of As volunteer or an employee has everyone agency, the responsibility to act in a manner to actively the law, which upholds participate in compliance, and promote and to report any activityaware that they of become violates any regulation. law or Corporate Compliance Plan Compliance Corporate conduct of Standards REFERENCE Notes issues include: Some examples of ethical 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 58

Š Š Š C aregiver TrainingGuide

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 information. more for team care your hospice Contact handled with strict confidentiality. 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

. , 59

hospicewr.org/caregiver-training https://ocrportal.hhs.gov/ocr/portal/lobby.jsf or by mail by or Department at: U.S. phone Health or of and Human Services, 200 Avenue Independence HHH Building, 509F, Room Washington,SW., (TDD). 800.537.7697 800.368.1019, 20201, DC; Complaint forms are available at 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 http://www.hhs.gov/ocr/office/file/index.html Qualified interpreters Information written in other languages

ƒ ƒ Qualified sign language interpreters Written information in other formats (large print, accessible audio, electronic formats, other formats) Free language services whose to people primary language is English, not such as:

ƒ ƒ ƒ Provides free aids and services with to people disabilities to communicate effectively with us, such as:

Mary Kay Tyler, MSN, CNP, CHPCA CNP, MSN, Tyler, Mary Kay Chief Quality Officer Compliance Officer and Privacy Inc. Reserve, Western Hospice of the Avenue Clair 17876 St. Ohio 44110 Cleveland, 216.383.3745 or 216.486.6007 Phone: [email protected] Email: Š 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, origin, age, disability, can sex, or you file a grievance with: If you need these need If services, you contact 216.383.6688. For moreFor information, please visit hospicewr.org/about-us/Pages/Non-Discrimination-Policy.aspx providedTemplate by U.S. Department of Health and Human Services 26 July 2016 Hospice of the Western Reserve: Western Hospice of the Hospice of the Western Reserve the Western of does exclude Hospice not treat or people them differently becauseof race, nationalcolor, origin, age, disability, sex. or Hospice of the Western Reserve the Western of compliesHospice with applicable Federal civil rights laws and does not discriminate the national basis on race, of color, origin, age, disability, sex. or Non-Discrimination ​Non-Discrimination Statements English REFERENCE 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 Español (Spanish) 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 60

Š Š Š Š C Email: [email protected] Phone: 216.383.3745 or216.486.6007 Cleveland, Ohio44110 17876 St. Clair Avenue Hospice ofthe Western Reserve, Inc. Privacy andComplianceOfficer Chief QualityOfficer KayMary Tyler, MSN, CNP, CHPCA aregiver TrainingGuide

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 information, For more de reclamo en el sitio web en el sitio reclamo de 800.537.7697 obtener Puede formularios los (TDD) D.C. Washington, 800.368.1019, 20201 Building 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 ocr/office/file/index.html Portal, disponible 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 gov/ocr/portal/lobby.jsf 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 are 주의: 한국어를 사용하시는 경우, 언어 지원 서비스를 무료로 available to you free of charge. Call 216.383.6688. 이용하실 수 있습니다. 216.383.6688 번으로 전화해 주십시오.

Hospice of the Western Reserve complies with applicable Federal Hospice of the Western Reserve 은(는) 관련 연방 공민권법을 civil rights laws and does not discriminate on the basis of race, 준수하며 인종, 피부색, 출신 국가, 연령, 장애 또는 성별을 이유로 color, national origin, age, disability, or sex. 차별하지 않습니다. HHS은(는) 인종, 피부색, 출신 국가, 연령, 장애 또는 성별을 이유로 누군가를 배제하거나 다른 방식으로 대우하지 ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos 않습니다. de asistencia lingüística. Llame al 216.383.6688. UWAGA: Jeżeli mówisz po polsku, możesz skorzystać z bezpłatnej Hospice of the Western Reserve cumple con las leyes federales de pomocy językowej. Zadzwoń pod numer 216.383.6688. derechos civiles aplicables y no discrimina por motivos de raza, color, nacionalidad, edad, discapacidad o sexo. Hospice of the Western Reserve postępuje zgodnie z obowiązującymi federalnymi prawami obywatelskimi i nie dopuszcza się dyskryminacji ze względu na rasę, kolor skóry, pochodzenie, wiek, niepełnosprawność 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 bądź płeć. 216.383.6688.

Hospice of the Western Reserve 遵守適用的聯邦民權法律規定，不因種 ATENÇÃO: Se fala português, encontram-se disponíveis serviços 族、膚色、民族血統、年齡、殘障或性別而歧視任何人。 linguísticos, grátis. Ligue para 216.383.6688. Hospice of the Western Reserve cumpre as leis de direitos civis ,federais aplicáveis e não exerce discriminação com base na raça, cor ةیوغللا ةدعاسملا تامدخ نإف ،ةغللا ركذا ثدحتت تنك اذإ :ةظوحلم -( مقر .nacionalidade, idade, deficiência ou sexo مقرب لصتا .ناجملاب كل رفاوتت

:مكبلاو مصلا فتاھ 216.383.6688-. ATENȚIE: Dacă vorbiți limba română, vă stau la dispoziție servicii .de asistență lingvistică, gratuit. Sunați la 216.383.6688 قرعلا ساسأ ىلع زیمی الو اھب لومعملا ةیلاردفلا ةیندملا قوقحلا نیناوقب وأ نسلا وأ ينطولا لصألا مزتلی Hospice of the Western Reserve وأ نوللا وأ Hospice of the Western Reserve se conformează legilor .سنجلا وأ ةقاعإلا Federale privind drepturile civile și nu discriminează pe baza rasei, culorii, originii naționale, vârstei, dizabilităților sau sexului. AANDACHT: Als u nederlands spreekt, kunt u gratis gebruikmaken van de taalkundige diensten. Bel 216.383.6688. ВНИМАНИЕ: Если вы говорите на русском языке, то вам доступны Hospice of the Western Reserve voldoet aan de geldende wettelijke бесплатные услуги перевода. Звоните 216.383.6688. bepalingen over burgerrechten en discrimineert niet op basis van ras, huidskleur, afkomst, leeftijd, handicap of geslacht. Hospice of the Western Reserve соблюдает применимое федеральное законодательство в области гражданских прав и не допускает дискриминации по признакам расы, цвета кожи, национальной ATTENTION : Si vous parlez français, des services d’aide linguistique принадлежности, возраста, инвалидности или пола. vous sont proposés gratuitement. Appelez le 216.383.6688.

Hospice of the Western Reserve respecte les lois fédérales en vigueur OBAVJEŠTENJE: Ako govorite srpsko-hrvatski, usluge jezičke pomoći relatives aux droits civiques et ne pratique aucune discrimination basée dostupne su vam besplatno. Nazovite 216.383.6688. sur la race, la couleur de peau, l’origine nationale, l’âge, le sexe ou un handicap. Hospice of the Western Reserve pridržava se važećih saveznih zakona o građanskim pravima i ne pravi diskriminaciju po osnovu rase, boje kože, nacionalnog porijekla, godina starosti, invaliditeta ili pola. ACHTUNG: Wenn Sie Deutsch sprechen, stehen Ihnen kostenlos sprachliche Hilfsdienstleistungen zur Verfügung. Rufnummer: 216.383.6688. DİKKAT: Eğer Türkçe konuşuyor iseniz, dil yardımı hizmetlerinden ücretsiz olarak yararlanabilirsiniz. 216.383.6688 irtibat numaralarını arayın. Hospice of the Western Reserve erfüllt geltenden bundesstaatliche Menschenrechtsgesetze und lehnt jegliche Diskriminierung aufgrund von Hospice of the Western Reserve yürürlükteki Federal medeni haklar Rasse, Hautfarbe, Herkunft, Alter, Behinderung oder Geschlecht ab. yasalarına uygun hareket eder ve ırk, renk, ulusal köken, yaş, engellilik durumu ve cinsiyet ayrımcılığı yapmaz.

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

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 ま す。216.383.6688まで、お電話にてご連絡ください。 AKIYESI: Bi o ba nsọ èdè Yorùbú ọfé ni iranlọwọ lori èdè wa fun yin o. Ẹ pe ẹrọ-ibanisọrọ yi 216.383.6688. Hospice of the Western Reserve は適用される連邦公民権法を遵守し、 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 Hospice of the Western Reserve tẹle ilana ofin ijọba apapọ lori etọ arailu せん。 ati pe wọn ko gbọdọ sojuṣaaju lori ọrọ ẹya, àwo, ilu-abinibi, ọjọ-ori, abarapa tabi jijẹ ọkunrin tabi obinrin. 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 61 Member of your Care Team include: WR196-ST (05/19) CALL ANYTIME, DAY Š Š Š Š

Spiritual Care: Social Worker: Nursing Assistant: Nurse: CARE TEAM: If not able to reach assistance at number listed above, call 440.942.6699. HOSPICE CARE or NIGHT, WEEKENDS or EVENINGS

800.707.8922 | hospicewr.org Certified Medicare/Medicaid Hospice, Licensed in Ohio Joint Commission on Accreditation of Healthcare Organizations

If you do not speak English, language assistance services, free of charge, are available to you. Call 216.383.6688. CS247-CM © 2020 All Rights Reserved (Rev. 01.20)